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Dealing with altered fluid management in the terminally ill may be one
of the most difficult experiences for families of hospice patients. We all
know that drinking adequate fluids is extremely important to our health.
Our bodies are made up of large amounts of water. The blood has large
amounts of water, and every cell in the body requires water to live. In
the terminally ill, the amount of food taken in often decreases as
patient's appetite's decline and their ability to process the food through
digestion also decreases. Later on, many patients will also begin to drink
less and less. Differences in patient's experiences will depend upon the
type of illness they have.
For many families, giving food to a family member is an active
_expression_ of their love: "food is love." In certain cultures and
religions, food holds an even higher place of reverence and refusing food
or drink is contrary to all their beliefs. However, in the case of the
terminally ill, providing food or liquids late in the dying process may
actually harm the patient by causing fluid imbalances. If the patient's
bodily systems and organs cannot handle the fluid, symptoms arise which
interfere with the quality of life of the patient. The family is torn
between giving the fluid (even if the patient does not want it) and
withholding fluid which they believe will cause "dehydration."
Giving fluids against the patient's will is a violation of the
patient's right to choose. Patients often know what they can or can't
handle, and they will drink if they can handle it. Patients who
are ready to die and whose systems are shutting down, will naturally curb
the food and fluids that they take in. Family members may have a
hard time accepting this change, because the underlying belief is that "as
long as he continues to eat or drink, he will continue to live." This is
not true! If a disease process is causing declining appetite and thirst as
the patient is approaching death, continuing to eat or drink will not only
not prolong life, it could hasten death! There is a natural process of
slowing winding down the body's metabolic processes: declining food and
fluid intake is a natural consequence of the dying process and is not
uncommon or to be fought.
In patients with cardiac or respiratory disease, problems with fluid
management may be exponentially increased. What kinds of problems arise?
Edema or swelling of the legs and arms may become a problem as "water" or
fluid begins to collect in tissue spaces outside of the circulatory
system's arteries and veins. Unnaturally high fluid levels in the tissues
can result in poor healing and susceptibility to local infections in that
area of the extremity. Elevating the extremities (usually feet and lower
legs) may be helpful in some cases. Diuretics or "water pills" may also be
prescribed by the physician.
However, edema of another sort can be quite upsetting and even more
troublesome: "pulmonary edema" or "fluid in the lungs," sometimes called
the "death rattle." Pulmonary edema occurs when fluid from the circulatory
system begins to pool in the lungs, causing respiratory congestion,
shortness of breath and impaired gas exchange resulting in not enough
oxygen being taken in. Failure to take in enough oxygen can cause many
problems including confusion, fatigue, anxiety, and even death. In some
disease processes, pulmonary edema is a common symptom of approaching
death.
In cardiac disease, such as congestive heart failure ("CHF"), edema may
occur in the extremities or the lungs, depending on which half of the
heart is weakened. In right-sided heart failure, the blood circulating to
the lungs brings added fluid to the lungs, while in left-sided heart
failure, the blood circulating to the extremities brings added fluid to
the arms and legs. When a patient is near death from many diseases, the
symptoms of fluid buildup in the lungs are similar to that of right-sided
heart failure.
In cardiac disease, diuretics may not be sufficient to control
pulmonary edema. Other medications such as scopolamine, atropine,
hyocyamine and/or morphine may be given. Morphine in combination with the
diuretic: lasix (furosemide) is one of the most effective drug
combinations of choice in cardiac-related pulmonary edema.
When pulmonary edema is caused by other than cardiac causes,
scopalomine, atropine or hyocyamine may be sufficient to "dry up" the
unnaturally excessive secretions (or fluid) in the lungs and maintain
patient comfort. Medications may be tried and dosages adjusted until the
right combination and strength is found: medicine is an art as well as a
science.
One thing should be well understood by family members caring
for the dying: if the symptom is caused by the terminal illness and
nothing has changed to remove the cause of a symptom, then whatever
medication the physician has ordered and which is being given must
continue to be given, generally, up to the very end, if possible.
This means, for example, that if the patient is having excessive
fluid building up in the lungs and has taken a medication to "dry up the
secretions," the cause has not been removed when the symptoms subside...if
the patient's breathing improves, it is only the medication's desired
effect. Stopping the medication at this point will only cause the fluid to
start building up again, and it may be much more difficult to get the
symptoms under control later!
If the lungs are filling up with fluid, and the patient is unable to
swallow, giving medications under the tongue (sublingually) may sometimes
add to the problem, because the fluid flows down into the lungs. In these
cases, you may wish to inquire about giving the medications transdermally
(by applying a medicated patch to the skin) or subcutaneously (by using
tiny needles for injections, which are not painful).
Aggressive medicating of symptoms in the actively dying process is a
key to keeping the patient comfortable. Removing needed medications from
the actively dying can cause an extreme crisis and unnecessary suffering
for the patient and all involved. If you have any questions about how to
administer these medications, ask the RN case manager who will be more
than willing to explain "symptom management" to you.
Hospice staff have observed some families literally "forcing" fluid
down dying patient's throats, against the advice of hospice staff and the
physician. In these instances, the patient basically "drowns" to death,
even though he or she may be in a coma. Patients who are lethargic,
stuporous or even in a coma cannot drink anything! Drops of fluid such as
found in liquid oral medicines may be given in very small amounts.
Anything that causes the patient to cough, or that may go into the lungs,
may not be given without serious adverse results. If the patient is not
conscious enough to cough or swallow, fluid given will certainly make its
way into the lungs ("aspiration") causing "aspiration pneumonia" and
likely hastened death. If you have questions about whether or not your
loved one can take in liquids, you should contact your RN case manager for
advice.
If you have difficulty with the idea of not giving food or fluid for a
loved one, when he or she can't even swallow or take it in without
difficulty, discuss it with your physician or the hospice RN case manager,
social worker or chaplain. There is a time to let go, and let the natural
process of dying occur. The most peaceful and comfortable death for the
patient is when medications are given which control the symptoms and
nothing is forced upon the patient. There is a time to live and a time to
die. Respecting the dying process, accepting the dying process, and loving
the person who is dying, are all part of the same process. Letting go does
not mean that you don't love; it simply means that you are being realistic
and compassionate toward the dying. By not interfering with the natural
changes that occur in the dying, you can help your loved one die in peace
and with dignity.
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