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.
"I'm sorry, but there's nothing more we can do."
No patient wants to hear that. No doctor wants to say it. And with good reason: It isn't true.
It is true that in the course of many illnesses, cure ceases to be an option.
But no hope of a sure cure does not mean no hope at all. It certainly does not mean there is nothing more to be done.
When you receive the information that your illness is serious, a palliative care team can help you handle the news and cope with the many questions and challenges...
Sometimes people feel guilty for having withheld or withdrawn treatment,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.