Palliative care nurse advisor ANNE MORGAN asks whether feeding the dying is the right thing to do or simply the easiest option when faced with families who see withdrawing nutrition as "cruel" or "starving the person to death".
Why are so many people who are dying given subcutaneous fluids?
Is it the right thing to do or is it simply the easiest option in order to avoid the sometimes challenging conversations with families and whanau? Without these conversations how can patients, families and whanau make informed choices about their end of life care?
Love and concern have always been expressed through feeding, providing food and celebrating by sharing meals. Since time immemorial we show nurture and love to one another in this way. People therefore become anguished over decisions around withdrawing or withholding food or fluids.
Artificial nutrition and hydration (ANH) is a medical treatment given to a person who is unable to eat or drink enough to sustain life or health. Such treatment does not offer the comforts that come from the taste of familiar food and fluids (which is so often the argument offered for providing these treatments at the end of life).
People with advanced disease will, at some point, lose their appetite, stop eating and drinking and therefore lose weight. The body is no longer able to process food and fluid as a healthy person might.
Force feeding people does not help them live longer or feel better. Commonly, people with advanced disease do not complain of hunger or thirst but may say their mouth is dry. All dying people will have a dry mouth and giving subcutaneous fluids will not relieve that, however, good and frequent oral care will.
Emotive arguments such as, “we can’t starve the person to death”; “they will be so thirsty and their mouth dry” and “it is cruel to watch them suffer without food and fluid” are just emotive words without understanding the reality.
We need to remember the person is dying from advanced disease, not from starvation. Families need to be helped to come to this realisation with gentle encouragement. It is not surprising that lay people take time to adjust; many in the health professions have difficulty with this concept.
The decision whether to start ANH has to be carefully considered and not become the default position. As a team, we need to review the probable benefits and burdens of the treatment. And explain these to the patient and family. Too often people may say “well a bit of subcut fluid won’t hurt them”. This is far from the truth; in the course of the dying process the person’s organs close down and they may not be able to deal with the extra fluid which may well accumulate causing an increase in pulmonary secretions, ascites and oedema. Fluid accumulation may cause increased suffering. Additionally, as people become weaker and lose the ability to control their bladder, incontinence can become an issue leading to tissue breakdown.
Having needles inserted, either subcutaneously or intravenously, in order to provide fluid replacement is painful and many people who have advanced disease have already had to suffer many needles during treatment and as a result some will have become quite needle phobic. Families too can find needles frightening to witness.
The end of life should be a time of patient, family and whanau peace and comfort and needles and fluids and a focus on ‘maintaining nutrition’ can compromise this time. It may make touch and closeness difficult.
It is often said that families expect their loved one to receive fluids. Of course they do when they have not received any information about the process of dying. Fluids may in fact cause more harm than good. In my experience when these conversations have been held honestly and with understanding then it is seldom an issue.
Giving people time to adjust the focus of care, time to ask questions and to understand answers and to share their feelings with each other is always time well spent. Helping families to show their love in other ways and allowing them time to be present with their loved one allows this change of focus. Teaching family members how to do oral care with any fluids familiar to the patient can allow them the time together with the knowledge they are doing something useful.. Gentle massage of hands and feet and use of music that is familiar to the patient are all things that family can share.
ANH should not be routinely used for people at the end of life but must not be categorically ruled out either. Artificial hydration can provide good symptom relief for patients who are morphine toxic or have delirium associated with dehydration. We must also be aware of cultural and religious beliefs where withdrawing fluids may be seen as unethical. In these circumstances discussions with the family and significant others will need to be incorporated into decisions that are made.
In summary then, effective communication about the potential disadvantages as well as the few advantages around the use of artificial nutrition and hydration is essential if the focus of care is to remain with the patient rather than on what the health team thinks may be easiest or less challenging. Explanation and giving time to adjust to the new focus of care is often the most humane and gentle way to ensure the best quality of dying is achieved.
Anne Morgan is Practice Advisor for Hospice New Zealand