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Sunday, April 21, 2019

Patient Rights & Patient Advocacy

As a patient, you do have rights and responsibilities when it comes to the doctor's office or the hospital. I have written about this previously, but I wanted to dedicate an article to it so that you would be aware of your rights the next time you are in a medical professional setting.

Dedicated to: Anastacia

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Emily's Stomach GP Podcast is available to listen to and my co-host and I have discussed this topic, if you are interested in listening.

According to the AMA (American Medical Association),

"Code of Medical Ethics Opinion 1.1.3

The health and well-being of patients depends on a collaborative effort between patient and physician in a mutually respectful alliance. Patients contribute to this alliance when they fulfill responsibilities they have, to seek care and to be candid with their physicians, for example.

Physicians can best contribute to a mutually respectful alliance with patients by serving as their patients’ advocates and by respecting patients’ rights. These include the right:

(a) To courtesy, respect, dignity, and timely, responsive attention to his or her needs.

(b) To receive information from their physicians and to have opportunity to discuss the benefits, risks, and costs of appropriate treatment alternatives, including the risks, benefits and costs of forgoing treatment. Patients should be able to expect that their physicians will provide guidance about what they consider the optimal course of action for the patient based on the physician’s objective professional judgment.

(c) To ask questions about their health status or recommended treatment when they do not fully understand what has been described and to have their questions answered.

(d) To make decisions about the care the physician recommends and to have those decisions respected. A patient who has decision-making capacity may accept or refuse any recommended medical intervention.

(e) To have the physician and other staff respect the patient’s privacy and confidentiality.

(f) To obtain copies or summaries of their medical records.

(g) To obtain a second opinion.

(h) To be advised of any conflicts of interest their physician may have in respect to their care.

(i) To continuity of care. Patients should be able to expect that their physician will cooperate in coordinating medically indicated care with other health care professionals, and that the physician will not discontinue treating them when further treatment is medically indicated without giving them sufficient notice and reasonable assistance in making alternative arrangements for care."

According to CFGAI Endo Services,

"Patient Responsibilities


The patient has the responsibility to provide accurate and complete information concerning his/her present complaints, past illnesses, hospitalizations, medications (including over the counter products and dietary supplements), allergies and sensitivities, and other matters relating to his/her health.

The patient and family are responsible for asking questions when they do not understand what they have been told about the patient’s care or what they are expected to do.

The patient is responsible for following the treatment plan established by his/her physician, including the instructions of nurses and other health professionals as they carry out the physician’s orders.

The patient is responsible for keeping appointments and for notifying the facility or physician when he/she is unable to do so.

The patient/family member/patient representative is responsible for disposition of the patient valuables.

Provide a responsible adult to transport him/her home from the facility and remain with him/her for a period of time designated by his/her physician unless exempted from that requirement by the attending physician.

In the case of pediatric patients, a parent or guardian is to remain in the facility for the duration of the patient’s stay in the facility. The Center does not see patients under the age of 16 years.

The patient is responsible for his/her actions should he/she refuse treatment or not follow his/her physician’s orders.

The patient is responsible for assuring that the financial obligations of his/her care are fulfilled as promptly as possible.

The patient is responsible to inform the facility whether the patient has a living will, medical power of attorney or other directive that could affect his/her care.

The patient is responsible for being respectful of all of the health care providers and staff, as well as other patients."

Patient Advocates

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Image Source: HERE

According to The Institute of Medical Care Improvement,

"Role of the Patient Advocate

A time of illness is a stressful time for patients as well as for their families. The best-laid plans can go awry, judgment is impaired, and, put simply, you are not at your best when you are sick. Patients need someone who can look out for their best interests and help navigate the confusing healthcare system–in other words, an advocate.

What is a patient advocate?

An advocate is a “supporter, believer, sponsor, promoter, campaigner, backer, or spokesperson.” It is important to consider all of these aspects when choosing an advocate for yourself or someone in your family. An effective advocate is someone you trust who is willing to act on your behalf as well as someone who can work well with other members of your healthcare team such as your doctors and nurses.

An advocate may be a member of your family, such as a spouse, a child, another family member, or a close friend. Another type of advocate is a professional advocate. Hospitals usually have professionals who play this role called Patient Representatives or Patient Advocates. Social workers, nurses and chaplains may also fill this role. These advocates can often be very helpful in cutting through red tape. It is helpful to find out if your hospital has professional advocates available, and how they may be able to help you.

Using an advocate – getting started

Select a person you can communicate with and that you trust. It’s important to pick someone who is assertive and who has good communication skills. Make sure that the person you select is willing and able to be the type of advocate that you need.

Decide what you want help with and what you want to handle on your own. For example, you may want help with:

Clarifying your options for hospitals, doctors, diagnostic tests and procedures or treatment choices

Getting information or asking specific questions

Writing down information that you receive from your caregivers, as well as any questions that you may have

Assuring that your wishes are carried out when you may not be able to do that by yourself.

Decide if you would like your advocate to accompany you to tests, appointments, treatments and procedures. If so, insist that your doctor and other caregivers allow this.

Be very clear with your advocate about what you would like them to know and be involved in—Treatment decisions? Any change in your condition? Test results? Keeping track of medications?

Let your physician and those caring for you know who your advocate is and how you want them involved in your care

Arrange for your designated advocate to be the spokesperson for the rest of your family and make sure your other family members know this. This will provide a consistent communication link for your caregivers and can help to minimize confusion and misunderstandings within your family.

Make sure your doctor and nurses have your advocate’s phone number and make sure your advocate has the numbers for your providers, hospital and pharmacy, as well as anyone else you may want to contact in the case of an emergency."

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According to The Patient Advocacy Foundation,

"Nancy Davenport-Ennis, Founder of Patient Advocate Foundation became involved in legislative reform on behalf of cancer patients while a dear friend of hers, Cheryl Grimmel, was battling both breast cancer and her insurance company. As Cheryl valiantly fought her fight, Nancy volunteered with the Virginia Task Force for Insurance Reform - sharing the previously underrepresented patient’s perspective and fought to reform insurance coverage for cancer patients. Victory for the task force came with the passage of Virginia House Bill 240 sponsored by Delegate Mary T. Christian in 1994.

Cheryl lost her battle with breast cancer in December 1994, and on the night of her funeral, as the rest of the world was ringing in the New Year, Nancy and Jack Ennis wrote business plans for two complementary nonprofit organizations geared towards solving the issues faced by patients like their friend Cheryl. National Patient Advocate Foundation (NPAF) and Patient Advocate Foundation were born in concept that night and became a reality shortly thereafter.

Cheryl's strength in the face of her battle serves as an inspiration to those at Patient Advocate Foundation as they work and interact with patients in need.

Our case managers advocate and mediate on behalf of patients to provide avenues of access for therapies, therapeutic agents and devices deemed medically efficacious by the medical and scientific communities while working to find sources of reimbursement to pay for care.

n the summer of 2013, after founding and serving as CEO for both PAF and NPAF for more than 17 years, Nancy Davenport-Ennis stepped away from the day-to-day management of both organizations, remaining as Chair Emerita. In July 2013, Alan Balch Ph.D. was named Chief Executive Officer, and is responsible for the operation and leadership of both organizations.

Today, both NPAF and PAF are national leaders on the forefront of important issues within patient-focused healthcare and serve as the voice of patients in need. At the helm are an Executive Board, Scientific Advisory Committee, and Honorary Board - all made possible by support from our Partners in Progress and generous community donors."

On their website they have a lot of resources to help you if you need help with insurance, loans, and that sort of thing,

"Case Management Services & MedCareLines

When PAF originally opened its doors in 1996, it did so offering one-on-one personal advocate services to patients battling serious disease. Today personalized case management remains core to what we do for patients. These services are provided individually to those patients that are facing a chronic, life-threatening or debilitating diagnosis, and the caregivers and providers that are working on behalf of a patient. Just like on that first day, PAF's case management services are provided at no cost to patients in need."

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According to The AdvoConnection,
"What’s the Difference Between Hospital Patient Advocates and Independent Advocates?

Posted by: Trisha Torrey

Francine reports:

After my husband Leonard had surgery last week, he stayed in the hospital four more days. I stayed by his side as much as I could and waited every day for the surgeon to check on him. I had a million questions! But I never saw the surgeon again once the surgery was over.

I waited patiently for the first day after the surgery. No surgeon. I called the surgeon’s office and they would not make an appointment for me, or even promise he would return my call, because it was my husband who had the surgery; they told me I would just have to hope to catch him when he visited my husband, which he would do once each day my husband was in the hospital.

I asked the nurses when the surgeon would come by. They told me he stops in every morning around 6 AM. So I got to the hospital by 5:45 – and they told me I had just missed him. I would give the hospital nurses my questions and they would give them to the surgeon, but I never got the answers.

Finally, the nurses suggested I go see the hospital’s patient advocate and tell her I wanted to see the surgeon – so I did. She was very pleasant, and tried to be helpful. She told me she would try to get the surgeon to contact me but that he had a reputation for avoiding patients’ family members. No promises. And still no surgeon.

I am furious! I was never able to get my questions answered, and now my husband has an appointment for follow up – and I don’t know how I’ll keep my mouth shut when we get to the appointment! He has had all kinds of problems since the surgery, and I don’t feel as if he got the care he needed because I wasn’t allowed to ask questions.

Unfortunately, Francine’s story is repeated hundreds (or thousands) of times a day. The details vary from patient to patient, but the part we’re going to focus on here is – how helpful could the hospital’s patient advocate be? And what could Francine have done differently?

In recent years, hospitals have begun stepping up their games to improve the patient’s hospital experience because Medicare’s rules changed, tying patient satisfaction to hospital revenue. I have my own opinions on how they have done that (As in – hospital experience just means a different kind of marketing. “Let’s improve the food, then patients won’t complain as loudly when no one answer the buzzer!) One way to improve the patient’s experience is to be sure there is someone who can listen to complaints. That person would be the hospital’s patient advocate.

Further, the Joint Commission, which is the accreditation body for hospitals, requires a patient advocate be available at all times in a hospital. These patient advocates have different names in different systems: patient advocates, patient representatives, care managers, ombudsmen… They are all tasked with assisting the hospital’s patients and their loved ones.

These patient advocates have become the customer service department with a twist.

Before I explain that twist to you, let me make sure you understand something important: hospital patient advocates do what they can to help their 'customers.' They are a good liaison to the hospital, and to the hospital’s medical and financial personnel. They can often run interference, mediate, or satisfy a complaint about the hospital. Knowing the constraints they are under, I have a lot of respect for these hospital customer service folks.

So What’s the Twist?

But that’s where the twist comes in. That is, that in most cases, the hospital’s patient advocate works for the Risk Management Department of the hospital. Let me repeat that: the patient advocate works for the hospital (meaning, not for you!) and in the vast majority of hospitals in the US, works for the Risk Management Department – which is the legal department. Risk Management is the euphemism for “make sure we don’t get sued.” In other words, the patient advocate is only there to cover the backside of the hospital. If they happen to help a patient or two along the way – well then – that’s nice, too.

What does this mean to you?

When the hospital’s patient advocate couldn’t get the surgeon to answer Francine’s questions, then Francine had only one recourse: an independent, private patient advocate. The hospital advocate’s allegiance meant she could not cross that line – the line that was so necessarily crossed to “encourage” the surgeon to connect with Francine.

The Allegiance Factor is an important concept – the point of today’s post. When an advocate is employed by a hospital, or by an insurance company, and because they have a financial stake in your care, then they cannot and will not be able to provide all the help you need because their allegiance is to their employer. That’s why Francine wasn’t able to get the answers she needed; because the advocate could only push so far without endangering her own job knowing the surgeon would subsequently have taken it up with her bosses in the Risk Management Department.

On the other hand, the independence of a private advocate means she isn’t trying to cover anyone else’s backside except YOURs because she works directly for you – her allegiance is solely focused on you.

If you or a loved one is hospitalized and you don’t seem to be able to get the service you need or your questions answered, then by all means, start with the hospital’s patient advocate.

But if you’re smart, you’ll have already hired an independent advocate to be part of your team. If you need answers or action, then it will be the allegiance of your private advocate who gets them answered."

Image Sources: HERE

According to Peacehealth,,
"Health Information Library

What Is a Hospital Patient Advocate? (00:01:33)
Video Transcript

Having to stay in the hospital can raise a lot of questions.

Questions about a health problem ... treatments, tests, equipment, medicines, bills, who does what ... the list goes on.

And the hospital staff does its best to answer your questions.

Everyone wants to help out ... whether it's an X-ray technician, a nurse, or your doctor.

But sometimes, you don't get as much information as you'd like ...

... or maybe you don't agree with something.

The hospital knows that these things happen sometimes.

And that's why it has someone ... the hospital patient advocate ...

to help you when you're not getting the answers you need.

The patient advocate helps make your voice heard ...

and works with other staff members to take care of questions and problems.

This can be before, during, or after a hospital stay.

Here are some examples of situations where an advocate could help.

You've been waiting all day for a test result. Now it's early evening.

You've asked several people about your test result, but you haven't received it yet.

Or let's say you want to know what each of your medicines is for, but ... after talking to the nurse several times, it's still not clear to you.

Or maybe you and your family don't understand your doctor's treatment plan, and you can't get the answers you need.

Your hospital staff wants to help. But when there's a problem ...

and you feel frustrated or lost ... it's important to take charge of your health and ask for the hospital patient advocate.

Current as of: December 13, 2018

Author: Healthwise Staff

Medical Review:Catherine Devany Serio, PhD - Psychology, Behavioral Health & Kathleen Romito, MD - Family Medicine & Adam Husney, MD - Family Medicine

This information does not replace the advice of a doctor. Healthwise, Incorporated disclaims any warranty or liability for your use of this information. Your use of this information means that you agree to the Terms of Use and Privacy Policy. Learn How this information was developed.

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