May 2007 Issue 11
Palliative Pearls
Brought to you by the JBMH Palliative Care Program
ARTIFICIAL NUTRITION & HYDRATION AT THE END OF LIFE
Artificial Nutrition and Hydration (ANH) is defined as the administration of nutrition or fluids via tubes placed
into the gut or vein.
Whether or not to feed and hydrate at the end of life is an issue that is fraught with multiple sources of
confusion, contradiction, myth, and emotion. Anorexia and cachexia at the end of life form a poorly understood
syndrome. The effect of this is the breakdown in the link between the intake of nutrition, the laying down of
new tissues, and the maintenance of a healthy state. Does ANH reverse this syndrome and provide comfort?
The patient in a persistent vegetative state or coma is without cognitive function and incapable of experiencing
pain and suffering. Patients with end-stage dementia are neurologically not far from this state. They are not
technically unconscious, but neither are they alert, often with poor quality of life. Should these patients be
provided with ANH?
Five physiological processes are required to sustain the life of an organism:
• Respiration
• Ingestion/Digestion
• Excretion/Elimination
• Secretion/Endocrine
• Reproduction
Since the beginning of time, until more recently, people who grew too old, too disabled, too weak, or too sick
to eat and drink died without a feeding tube in place. It seems logical to assume that rejection of food is a
physiological component of a terminal illness and the dying process. Oral intake is volitional, and subject to
rejection in the presence of anorexia of whatever origin. Artificial feeding, on the other hand, is provided in
amounts calculated to satisfy nutritional requirements. The body cannot block its entry but can only reject it by
malabsorption and regurgitation, well known complications of tube feeding.
What are the myths regarding stopping or not initiating ANH?
• Death by starvation
• Hunger
• Thirst
• A cruel and torturous death
What are the myths regarding the provision of ANH?
• Tube feedings keep the patient comfortable
• Increase energy
• Prolong life
• Prevent or reduce the incidence of pressure ulcers
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What are the FACTS?
• Patients do not die of starvation. Terminally ill patients are already debilitated by their disease process.
Starvation implies cruelty and abandonment and is a complicated and lengthy process. Stopping food and
fluids can cause a state of ketoacidosis and the production of endorphins. These are ways in which the
body provides its own analgesia/anaesthesia and a feeling of satiation, or lack of hunger and thirst.
• Studies indicate that most patients do not feel hunger or thirst, or are easily satisfied with a taste of food,
ice chips, or good mouth care.
• ANH in the dying patient can cause edema and hypersecretions
• ANH can cause infections, diarrhea, aspiration pneumonia, and pain
• ANH suppresses the natural physiological mechanisms of the body shutting down and sometimes
increases feelings of hunger and nausea.
• No studies have shown ANH at the end of life to be effective in providing greater comfort and quality of
life, in preventing or improving pressure sores, in prolonging life or increasing energy and well-being.
IMPORTANT QUESTIONS THAT SHOULD BE ANSWERED BEFORE INITIATING DISCUSSION
WITH THE PATIENT/FAMILY
• Is the patient capable? If so, what are his/her goals? If not, does the patient have an advance directive?
Who is the substitute decision-maker? What goals for care does the substitute decision-maker have? Is
there family conflict about this issue?
• What are the patient’s/family’s cultural or religious beliefs? If religion or spirituality is important to the
patient/family, are there clergy who might be helpful? Be aware that there may be many different
perspectives on this issue within a single religious tradition, so be sure to determine the perspective of the
patient’s particular religious perspective/community if indicated.
• In this particular situation, does ANH have any potential benefit that outweighs the risks? (For example,
could fluids be helpful to provide temporary improvement in delirium, artificial nutrition for inoperable
malignant bowel obstruction, support quality of life in patients with an indolent course of disease or to
help maintain a good performance status?)
KNOW THYSELF
• What are my own values and feelings about artificial nutrition and hydration at the end of life? If I have
strongly-held views, am I aware of how these might influence my interactions with patients/families
about this issue in an untheraputic way?
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PROCESS FOR DECISION-MAKING
• Establish goals of care with patient/family
• Review the benefits/burdens of ANH carefully with the patient/family so they can make informed
decisions.
• Recommend a specific care plan that best helps to achieve the goals of the patient. Do not simply present a
variety of options from which the patient/family can.choose.
• Consider a time-limited trial if the patient/family insist on ANH despite recommendations against it. Set
goals with the patient/family (e.g. improved energy or sense of well-being) and establish a firm date in 3-4
weeks to re-evaluate these goals. If the goals are met, it may be reasonable to continue. If not, the family
will already be aware of the specific criteria which indicate to the team that the time has come to stop
treatment. This can make the transition much easier for the patient and family.
• Ensure you use a unified team approach, so that everyone who interacts with the patient/family is aware of
the patient’s individualized goals of care. Develop processes such as an up-to-date care plan to ensure that
all team members can provide information which is complete, consistent, and accurate. This promotes the
best possible relief and prevents suffering.
WHEN ANH IS WHITHHELD OR WITHDRAWN
• Reassure patients and families that most of the resulting discomfort can be managed effectively
• Delirium can be treated in a variety of ways: pharmacologically, environmental modifications, reducing
noise.
• Thirst and mouth dryness can be alleviated with ice chips, mouth rinse, or mouth sprays and swabs.
Families can be encouraged and taught to participate in the care.
• These patients should be offered comprehensive palliative care, addressing physical and psychological
symptoms which include emotional and spiritual support for families both before and after the patient’s
death.
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THE IMPORTANCE OF LANGUAGE
• The cruelty and abandonment implied in the word “starvation” are not relevant to the dying patient.
• Avoid the use of terms such as “life-sustaining” or “life-prolonging” to describe ANH. This implies that
it sustains life, or inversely, not choosing ANH will mean that one will not live long without it.
Empirical evidence does not support this definition.
• The “life” in life-sustaining implies more than physiological functions. It implies the sustenance of
one’s being or quality of life, the psychological and spiritual existence. Thus the choice of ANH
suggests the extension of physical functioning as well as the psychological or spiritual . However, if the
physical body supports the spirit and ANH cannot meet the physiologic goal of mending the body, it
may be acceptable to let go of the body and welcome transition to the spiritual realm.
• “Life-sustaining”, when used by health care providers, may draw families in to the idea that good
medical care is equated with technological interventions and “medical abandonment” with palliative
care.
• Consider consistently using the term “artificial nutrition” rather than “feeding tube” which may bring to
mind the image of feeding to promote growth and development.
AND FINALLY
Deciding what is ethically right or wrong within medicine remains a complicated process. The ethical concepts and
principles must be interpreted in the light of individual realities. Efforts to do so must be done with both wisdom
and humility. True wisdom begins with the acknowledgment that we do no know all the answers to life’s questions.
Our motivation is always to attempt to provide the care that is in the best interests of our patients and their families.
If you have any question, please call
Sue Clarkson at x 5724 or
Ildy Tettero at x5743
We would like to acknowledge the contribution of Elizabeth Wensley and the Palliative Care Program Team to the
content of this publication.
References available upon request.