Patient Advocacy During Hospitalization

I have had three recent family situations which have gotten me heated up on the issue of the need for patient advocacy. Its not that care without advocacy is necessarily bad. Its just that, as I reflect on it, I'm not sure it CAN be adequate without someone sitting by the patient who cares at a deep level--whether this person is a friend, spouse, family member, whatever--who is able and willing to constantly advocate for the patient.

Briefly, my "three situations" are: 1) a wife who has Waldenstrom's, post bone marrow transplant, who is returning for chemotherapy after three years treatment free; 2) a daughter who is pregnant (separated from husband), living with us, who is receiving obstetric care; and 3) a disabled son who is currently hospitalized in a small community hospital 2 hours away.

So, here's the dilemma: Each of these patients has varying needs and abilities to "fend for themselves" in the health care system. One of them is totally disabled and, thus, without someone present is totally at the mercy of the "nurse of the day". One day, he had a nurse who was caring and attentive and, the next day, he had someone who seemed to be totally over her head and, although she thought she was doing a good job, was doing a terrible job of taking care of the basics, monitoring output, attending to basic hygeine, etc.

So, I have been involved in a varied and fairly active advocacy role in each of these three situations and it is not an exagerration to say that none of them would have received optimal care without it.

What do advocates do and how does that impact the patients' care? Here is a brief list:
1. Assess the patient's physical comfort level and provide little necessities, body position adjustments, etc.
2. Double check all medications administered to make sure they are what has been ordered, in the right doses, and given at the right time.
3. Ask about key lab results and, if possible, keep copies and, if necessary, ask for interpretation from nurse or doctor.
4. Ask questions, questions, questions: is it time for the catheter to be taken out? If not, when? Is the IV leaking? When is discharge planned? What are the plans for discharge medications? When is the follow up appointment? And so on...

But, in spite of the importance of physical presence and asking questions, I am convinced that the mere presence of a "caregiver and advocate" changes the fundamental dynamics of a hospital care situation. It not so subtly gives a message that "we are watching what you are doing and will ask you if we have any questions or concerns about what is happening"?

It is not even fair to say that hospital caregivers intentionally neglect patients who don't have bedside advocates. I believe it is just that they are spread thin and stressed and, in many instances, need our help to meet the needs and priorities of the patient...

So, don't hesitate to serve as strong advocates for your hospitalized relatives!

Your comments and opinions are always welcome.