How should I handle my personal feelings when acting as a health care agent?
It is very important that you stay in touch with your own feelings while you
are acting as an agent. Otherwise, you may not realize that they can affect
your behavior and even your decisions. You may be experiencing anxiety or fear
about what will happen to this person you love.
You may be concerned that the person is suffering or is in pain and may
worry about how treatment will affect his or her condition. You may fear
thatyou will not do the right thing or that you are not being assertive enough.
You may worry that you are making decisions that make you feel better rather
than those that are best for the patient. You may also be struggling with
grief, particularly if the disease has taken away the person you knew or if you
anticipate that the person will soon die.
For each item, select the number that best describes your situation. Total your scores to get a big picture. Lower scores indicate less manageable situations; higher scores indicate situations that may be more readily managed.
The care receiver:
_____ (1) Has few if any financial assets
_____ (2) Doesn't qualify for government assistance programs
_____ (3) Is financially able to pay for needed support and care
_____ (1) Has no financial assets to give to the patient's care
Sometimes people feel guilty for having withheld or withdrawn treatment,
even when they know for certain that doing so is what the patient wanted. It
may help to remember that if it were not for you, the person you love might
have had to endure a treatment that they did not want, or they might have been
deprived of care that they did want.
It is hard to listen and to hear what health care professionals are saying
when you are under emotional stress. It is difficult to be objective when you
are afraid of losing someone you love. End-of-life decisions can be
particularly difficult even when you know the person's wishes very clearly. Try
to accept your feelings and be patient with yourself. You can usually defer
making a decision until you have a chance to think about it. Do not blame
yourself if you forget to ask something or if you are afraid you made a wrong
decision. If, after thinking things over, you want to change your mind, you
generally can do so. As a rule, you can find another opportunity to ask
Unacknowledged feelings can make you very angry, and your anger may come out
in inappropriate ways such as arguing with doctors, nurses, and others caring
for the patient or with family members. Creating conflict when it is
unnecessary will make it more difficult for you to get information and be an
effective advocate. Anger can even hurt the care of the patient if the focus of
those caring for the patient shifts from dealing with the patient's needs to
dealing with you.
It is perfectly appropriate to seek help. People without medical experience
cannot be expected to understand the health care systems and the medical issues
that are involved. You should expect to need guidance in dealing with them.
Some physicians can be quite sympathetic to the issues you are dealing with
and, if asked, will try to help.