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Q I am trying to be an advocate for my mother who has some health issues and I feel as though we are getting lost in this complicated health care system.
I have permission to be with her during the frequent visits to the numerous specialists she must see. It seems when I bring up a concern, all we get is another series of tests, a trial for a different medication, or a referral to yet another specialist.
My mother does not want to keep seeing new physicians and repeating the same information all over again. She does not understand all of this “fussing” and would just like to be comfortable.
I want her to have the best quality of life she can have. Is there an easier way to go about this?
(From a frustrated daughter in Lancaster)
A You are certainly not alone with these feelings!
Our medical system has become very complicated. I think part of the issue may be that with all we are learning about the human body and all of the different conditions and illnesses that can affect us, physicians are required to maintain a highly specialized focus.
That specialized focus leads to the many specialty areas of practice. Our job is to learn how to navigate this system and get the most out of our encounters with different physicians.
Selecting goals
First, I would have a conversation with your mother about her feelings related to her health and ask her what she wants. In other words what are her goals?
Without any knowledge of her health conditions I will offer the following as an example:
Does she want to resume an activity she can no longer perform because of pain in her hip or knee? If that is the case she may want to pursue a joint replacement. If she does not want to undergo a replacement would she be comfortable with having medication or exercises to reduce the pain, and would she be willing to live with some limitations?
It all begins with understanding what your mother wants for her own health.
Communication with health provider
When the two of you see her primary physician, help him, or her understand the desired outcome.
You might say something like, “My mother has been having more pain in her knee. She wants to be able to join the walking club at her senior center but this pain is not allowing her to do that.
She does not want to have surgery so what are some options for treating this and helping her reach the goal of joining the walking club?”
That way the physician understands and can prescribe a treatment regime that will support her goal.
Please understand that it may still involve a visit to a specialist. However, verbalizing the fact that joint replacement is not what she would like, the specialist may pursue a different treatment regime.
Desires, expectations
It all begins with an honest conversation with your mother about her desires and expectations.
Write them down in order of importance and then share that with the physician(s). That way, everyone involved with your mother’s health care has the same information and can function more cohesively to support her.
Navigating our health care system can be complicated and confusing, but you can take some actions that will give you a greater sense of partnership in the relationship.
One thing is certain, your mother is very lucky to have such a supportive daughter. All the best to both of you.
Jean Mueller has been a registered nurse for over 30 years. Her experience includes working in home care settings, skilled nursing care, and training individuals to become certified nursing assistants. For the past 13 years she has worked in the Aging Services department of the Diocese of Madison Catholic Charities. Questions for the “Ask Jean” column may be sent to Jean Mueller at jmueller@ccmadison.org