Wednesday, January 14, 2009

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.

5 comments:

Brenda said...

I have served as a patient advocate for my sister and my father on separate hospital stays. It's a very important job and I believe medical professionals appreciate a clear, calm voice to help care for the patient. I have also served as a patient advocate on doctors visits with my sister. Having an extra pair of eyes and ears is valuable. Many times my sister was so caught up in her pain and situation that she could not express herself or truly understand the doctor. Has her advocate, I would take notes and write a summary of what transpired during the appointment. I have even emailed physicians with the summaries to make sure that I got a clear picture.

I think everyone should have a patient advocate. Are there companies available where you can hire a patient advocate if your family is out of town or unavailable to help?

I would like to start a company providing patient advocacy services.

Charles Smith, MD said...

Brenda,

I think that sounds like a great idea. I am not aware of anyone doing it, but if there are, I don't think you'd have much competition! Good luck and thanks for your comments.

camila said...

Charles,

Thank you for your initial "letter". Truthfully I do not know how you can possibly be there for 3 loved ones at the same time. You must be an amazing person.

I have also served as a patient advocate for family members as well as "professionally", traveling to both Sloan Kettering and the Cleveland Clinic from New Mexico. After my first experience in the mid-90's, all I could think was that please, please do not let me ever be in the hospital without someone next to me, caring for me and advocating 24/7! This morning someone asked me to come to southern california next week for 4 or 5 days while they have surgery, but I am already booked here.

Brenda was absolutely correct about taking the notes and I hope she does start a business or referral service. A spiral notebook is of the utmost importance to record absolutely everthing that occurs: the time and date someone has entered the room, who they are, what they said, questions the "patient" or family member, or advocate may have for when the doctor's make their rounds in the early a.m., list the medications, etc., etc., etc. Keeping copious notes can be the difference in a mistaken procedure occurring!

I look forward to checking this site periodically to see what others may post.

Thank you,
Camille

Bob said...

As with many of you, I had too much too do and too little time to do it. While my mother was in the hospital, I found most of my visit was not with her, but making sure the staff would do their jobs, reviewing the chart to find out what was going and checking her meds. I had to advocate her needs when no one would. I tell all my friends not to let anyone go into a hospital along. I'd love to work for a pt advocate service company or join with others to form one. Health care has become to complicated and time consuming for the average patient and their families.

Hannah said...

Hi,

This is Hannah Bevills, I am an editor for Hospital.com. We are a medical publication whose focus is geared towards promoting awareness on hospitals, including information, news, and reviews on them. We do this to promote the quality of a patients visit in offering them a chance to choose where they receive care. Given the relevance of what you are offering from your site and what our mission is, I feel we may be able to collaborate in some way or another, I look forward to your response regarding the matter.

Hannah Bevills
hannah.bevills@gmail.com
www.Hospital.com