Wednesday, March 21, 2012

A Patient Advocate

The Many Roles of a Patient Advocate

A patient advocate isn’t always someone who sits at the patient’s bedside and in many cases watches them sleep, or someone who helps with bill payment, insurance coverage or medical chart explanations.  A patient advocate can wear many different hats and, if patient advocacy is something you want to do, I suggest you think about the best way you can help.
I received a phone call this week from a social worker who received a call from one of her clients who was hospitalized.  The client didn’t want to have a procedure the hospital wanted the patient to have.  If the patient didn’t get the shock treatment, the patient would be institutionalized the hospital staff told the patient.  This is something the patient feared.
The social worker called PULSE of NY to find out how to find a patient advocate within the hospital to help her client.  I explained that if there is one, just call the switchboard and ask to speak to the patient representative or patient’s advocate and she would be connected.  If there isn’t one, she will get connected to the person doing that work, which may be in the quality department or nursing department.
The social worker said she couldn’t find the contact information on the website; something I have found frustrating for years.  The social worker didn’t want to get too involved because she understood the HIPAA laws.  (HIPAA, HIPAA, HIPAA!!)
I went on to explain that she can play an important role right over the phone and HIPAA had nothing to do with it.  Here’s what I explained she should do:
Get the patient advocate / representative from the hospital involved.  Ask NO questions about the patient.  Just explain who you are and that you are encouraging further conversation between someone in the hospital and the patient.  Immediately after contacting the patient representative the social worker should call the patient and let the patient know that contact has been made.  Have the patient contact the social worker while the patient and the advocate / nurse or doctor are in the room.  The patient can hand the phone to them and ask the hospital staff to explain to the social worker what is happening or put the call on speaker – no HIPAA violation if the patient does it.
Now, the social worker and the patient can have a conversation and together decide what is best for the patient.  The social worker, acting as an advocate can help build that bridge for better communication.  The additional time spent with the social worker, in many cases is a welcome relief to hospital staff if they are not making headway with a patient.
Now at least they will feel they are getting actual informed consent or, if the patient still refuses treatment, they know they did everything possible.
There are two sides to every story.  The social worker is only hearing what the patient wants to tell her.  There may be alternatives the patient didn’t hear or the patient may be acting out.  Whatever it is, the patient needs a trusted, neutral, supportive and calming voice to help the team get through this.  In many cases patient may not have family to help them through a hospitalization but that doesn’t mean there is no support.  With phones available in every room or patients with cell phones, friends, families and even patient advocates can be helpful from miles away.

Sunday, March 11, 2012

Patient and Family Advisory Council

Patient Safety Awareness Week

As a decade of Patient Safety Awareness Week celebrations come to a close, it’s a reminder of what we are actually celebrating.  I spoke yesterday at a major metropolitan hospital about the patient’s role in patient safety and we I had an opportunity to meet with their patient and family advisory council’s patient safety committee.  Years ago it would not be “safe” to have a community member (who is not on the hospital board of trustees) know that there are errors made in the hospital.  Now, it would be unsafe to not have a patient or their family member there, in the trenches, to look, listen and share what is happening.
The participants of this focus group shared their work and even some of their own unplanned outcomes and disappointments in their care.  But, what they all had in common is the utmost respect for the facility as well as the people who run it.
How could it not be wonderful for senior administrators to have volunteers who are available to be the eyes and ears of the hospital from the ground up.  As a bedside advocate with over 600 hours bedside time, this is really where we can see how errors happen.  I remember seeing a nurse stop preparing medication because I asked for a pitcher of water.  I have seen how the medicine cart, supposed to be at the patient’s bedside doesn’t fit through the door.  I have seen a nurse have a conversation with the wrong patient and a family member correct the chart – no, the surgery will be on the left side, not the right side.
To report these as “near misses” becomes tedious and there is paper work, but patients or community members understanding where things can go wrong can also be a set of eyes and ears to help improve the system.
We've come a long way baby!

Monday, March 5, 2012

What's in a Word?

A 17 year old who is living with me was desperately in need of a tonsillectomy. I made the choice to go through it with him even though my child bled to death, for 8 days following his tonsillectomy a number of years ago. Repeated trips to the emergency rooms were halted with the doctors saying "don't worry". Years later, I realized it is my job, as a parent, to worry and those words, used by a healthcare professional are worse than fingernails on a chalk board............... now what?

The surgeon answered all of our very suspicious questions about his history of tonsillectomies very eloquently until I asked the young man to leave the room and shared my own personal experience with the doctor. He looked me in the eye and said "I understand your concern".

Imagine my shock when the child I am caring for, on day five, began spitting up dark red blood. When I reached the surgeon by phone, he again said "I understand your concern" and again said it after he treated him at the hospital. Not until about 2 days later did I realize this physician has never used the term "don't worry".

I thought it important to share this and let people know how important words can be when there is an emotionally charged situation. 

The words "don't worry" can be seen as an order - or being told what to do (or not do). They leave no room for dialogue unless someone who is scared wants to put up a fight. Rarely will someone stop worrying because someone tells them to. They will, instead hold back their true feelings and concerns, maybe pleasing the medical professional who doesn't want to explain any more??

This surgeon was justifying my feelings. By recognizing he understood, I had no reason to pursue my concerns because he heard me.

I hope people in the medical field will throw out the words "don't worry" and try using, instead, "I understand your concern".