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.
Sometimes people feel guilty for having withheld or withdrawn treatment, even when they know for certain that doing so is what the patient wanted.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 questions.
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.
If you feel particularly comfortable with a nurse, talk with him or her. Chaplains often have a great deal of experience dealing with individuals and families struggling with difficult decisions and can be very helpful, even if you do not share a common religious outlook. Patient representatives and social workers also may be resources. Look to your own friends and communities. Sometimes people you do not know well, but who have gone through similar situations, can be a wealth of support and information.
Serving as a health care agent is both an honor and a responsibility. You have probably been asked to serve because you have a personal and emotional connection to the person making the appointment. The person trusts you and believes you can use your best judgment. There is no ideal standard for the perfect agent.
You can only do the best job that you can do. This booklet highlights some of the challenges an agent may face and offers suggestions for possible responses; however, the situations covered here may never occur or you may encounter different ones. If you are called upon to act as a health care agent, it may help to bear in mind that you are providing a deeply-needed service to someone who is now helpless. This knowledge can be a source of great personal comfort and satisfaction for you and can sustain you when making difficult decisions.