"When things seem out of control, try to find a sympathetic person who knows the care system well and who can help you see new perspectives and creative solutions. If you feel that you or someone you love is being treated poorly, you will probably have to find the energy and thoughtfulness to complain effectively. Hospitals and health care providers are not unfeeling or malicious — although you may sometimes think they are. It may help you to recognize that problems are often the result of systems and procedures designed to cure disease, or at the very least, prolong life. If you can imagine yourself in the doctor or nurse's place, you might be better able to state your concerns constructively, without creating tension and hard feelings.
When you complain, try not to just "take it out" on whoever is closest. Probably the person who has to be persuaded that something is wrong is not nearby. Find out who supervises the care you find troubling. Then set a time to talk with that person. Write down the key facts to remind you of the things that will make the person see just how important the problem is."
Excerpted from Handbook for mortals: guidance for people facing serious illness. (Joanne Lynn) Oxford Univ. Press, 1999
Some points to keep in mind:
You have the right to ask — for a different caregiver if the "chemistry" isn't right for the patient, for a second opinion, for other options if the one presented doesn't seem to be working. Sometimes the care provider is not aware that there is a problem.
Very often, the patient does not have the energy to advocate for him/herself. As the caregiver, you may need to speak up — even if you've never felt that was the "polite" thing to do before.
If things continue to go badly after earnest discussion(s) with the care provider, consider changing to a different provider.
If your insurance only pays for a certain provider and that arrangement does not work for you, go back to your insurance company and ask for an alternate provider. By law, you are entitled to change providers.
