Monday, January 30, 2012

Family Centered Patient Advocacy

Family Centered Patient Advocacy

“I have no idea who is in charge of my husband’s care.  One doctor says one thing and another doctor says another.” The emotional voice of an elderly woman, obviously scared for her husband’s well being, was on the phone early one morning.  She explained that her husband was hospitalized for a stroke, and she had questions that weren’t being answered.  She spoke to the patient representative at the hospital but still was confused about his diagnosis and the plan for his care.

The PULSE Care Coordinator (CC) didn’t need the details of his health; she only needed to know his name, the hospital and room number.  Following the normal routine of phone calls, first to the patient representative and then to the manager of the patient representative’s office, the CC  explained that there is a patient’s family in need of extra attention.  By the time the CC called the patient’s wife back, the Patient Representative from the hospital was walking into the patient’s room.

Calls like these are common at the small office of PULSE of NY a community-based patient safety organization. It often helps when an independent person or Care Coordinator, helps the family navigate the health system, knows who to call and helps the family with understanding their rights.

When visiting a family who had a very sick new mother in the hospital for a week, the CC learned that the family didn’t understand the care plan.  The CC organized a meeting with the doctor’s in charge, the nurse manager and the family and was able to sit with the family in the meeting and assign a family member to take notes. 

The Family Centered Patient Advocacy Program has been developed to train and support, as a patient’s advocate, the family member or friend of a patient scheduled for surgery, diagnosed with a life changing condition, elderly, suddenly injured or scheduled for an invasive procedure.  This program has been developed to empower the community or family member(s) to understand their role as an advocate and partner to help ensure the best possible outcome in the patient’s care. Family Centered Patient Advocacy assists the patient’s family in navigating the health system to help ensure safe, quality healthcare services.  While the family of the patient may be too emotionally involved to help make decisions, understand instructions or ask appropriate questions, Care Coordinators from PULSE of NY are trained to help the patient, and their family in person or by phone to make the best decisions.

A trained Family Centered Patient Advocate, with the help and training Care Coordinator will be able to help:

·         A patient speak-up for their needs and understand their rights while hospitalized,

·         Reduce the chance of patient hospital readmission,

·         Assist the patient in understanding the diagnosis, care plan and discharge instructions,

·         Assist in reducing medical errors with training in policy and patient safety standards,

·         Speed the recovery of a patient who has assistance from professional help at home, trained community members, family and friends.

Care Coordinators can be on call to help the Family Advocates over the phone or in person if there is a breakdown in communication, stressful decisions to be made, or the patient needs help in preparing for the doctor’s visit or a hospital stay.

PULSE of NY is looking for independent Care Coordinators who will help the family and friends of the patient understand the healthcare system and what they can be doing to help oversee a patient’s care.

PULSE of NY is seeking volunteers to be trained as independent Care Coordinators who help family and friends of a patient understand the healthcare system and who assist in overseeing a patient’s care.

In many cases, the coordination can be over the phone.  When there are hospital visits, it is often to listen to the patient and family about concerns which are usually about communication.  Explaining treatment or diagnosis must be left to the healthcare providers, but a Care Coordinator can facilitate the patient-provider conversation either in person or over the phone.

Today, more and more family members are expected to be at the bedside of the patient, but they are not taught what they should be doing there. Care Coordinators help the patient’s family and friends understand the importance of hand hygiene to avoid infections, checking medications to prevent medication errors, preventing falls, preparing for the doctor’s visit with lists of questions and concerns, advanced directives, record keeping, and surgery safety protocol, while helping with health literacy and communication breakdown within the hospital and or medical facility.  The Care Coordinator may have little contact or communication with the patient; instead, their contact is with the family, training them to be the patient’s advocate.

If you are interested in being trained as a Care Coordinator to help the family and friends of the patient as a patient’s advocate please call PULSE of NY at 516-579-4711 or e-mail

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