Patient Advocacy – Know the Tools and Terms

We recommend you start here, as this can be overwhelming, but it is important to understand.

You may need to copy and paste some of these forms onto a word processing document and then edit them. They are provided here to save you valuable time. Some of the documents are available at the bottom of the page in downloadable Word format.

MEDICAL POWER OF ATTORNEY (MPOA) vs. HEALTHCARE PROXY

It is very important to have your affairs in order before you go to a hospital. Who will you designate to make decisions on your behalf if you cannot do so? Are there any decisions you feel strongly about that you would like to put into an Advanced Directive? Some may say (no Remdesivir, or no Ventilator, etc.).

It is very important the hospital has your MPOA/Proxy information on record, along with any of your Advance Directives. It is equally as important that your POA/Proxy has receipt/confirmation of the hospital attaching this information to your medical record. 

There are differences between a POA and a Healthcare Proxy you need to be aware of. For example, a Power of Attorney can litigate on behalf of an incapacitated patient, but a Healthcare Proxy cannot automatically do this, and in some states must go through a court process to be deemed POA first. 

Proven Strategies and Therapies (you may have to fight for)

HEALTHCARE ADVANCE DIRECTIVES

A Healthcare Advance Directive is a form that allows you to document your healthcare wishes in advance, for a time you cannot make your own healthcare decisions. If you know there are specific things you would like, or would refuse while hospitalized, list them in your Healthcare Advance Directive.

It is vital that your Medical Power of Attorney (MPOA) and/or your Healthcare Proxy know of your wishes and can access to your Advance Directive. In addition, ensure the hospital has a copy of your Directive in your chart. Take the extra step to provide your Advance Directive to the physician overseeing your care.

Advocate for your hospitalized loved one with the acronym – PATIENT

You are the Patient Advocate. Now what?

Hospitals have treated our loved ones in ways that do not promote healing; i.e, seclusion, undernourishment, dehydration, etc.  With that in mind, as the patient advocate, you must arm yourself with all relevant information to fight for their best health outcome.  To do this you must gather all the relevant information on patient care, hospital protocols and policies. 

GATHER the Patient, Hospital and State Information Listed Below: 

NOTE:  The access/record request must be in writing, by law.  You cannot make determinations of care and fulfill your duties unless you have this information. They will likely try to make it hard for you to obtain. Make sure your attempts are documented.  

PATIENT CARE

• Access to Electronic Health Records while patient is being cared for.
• Nutrition: 24 Hours Assessment, 48 hour Plan.

• Physical Therapy
  • To maintain muscle strength and lymphatic flow 
• Oxygen Therapy Transition Plan
  • What is being done to titrate down the amount of oxygen and wean the patient? 
• Treatment Plan
  • Investigational drugs such as Baricinitib must have INFORMED CONSENT of all known and unknown risks along with the right to refuse by patient or MPOA. 

HOSPITAL POLICIES, FEDERAL AND STATE LAW

• Patient Bill of Rights: The Federal version is listed here, but the hospital and/or your state may have their own version.  Have the hospital provide a copy of the version they use. Often, you can find it on the hospital website.

• Hospital Infection Control Policy
  • This policy should state the hospital’s seclusion/isolation guidelines. Is it superseding the CDC and State guidelines? 
  • Criteria for being transferred into a critical care unit? 
  • Criteria for being downgraded out of a critical care unit? 
• Medical Practice Act in your state. 
• Nurse Practice Act in your state. 

Hold them Accountable – Guidelines, Forms, and Tools to help you ADVOCATE 

Hospitals must follow Guidelines: 

NUTRITION

Hospitals have nutritional guidelines they must follow. No matter how ill a patient is, there must be a nutritional screen completed within 24 hours and documented within the patient’s chart.

Critical Care Nutritional Guidelines: 

HYDRATION

Sadly, it is important to verify your loved one is receiving enough hydration while hospitalized. Find out how many liters of fluid in, and how many liters of fluid out. Do this each day. If your loved one has double the liters out than in, or triple out than in during the day, there is a very big problem.  

PHYSICAL THERAPY

Use it or lose it! A hospital must provide PT services to patients in critical care units. Request this if it’s not starting immediately. No matter how sick someone is, there are things PT can work with the patient on.

RIGHT TO TRY and COMPASSIONATE USE

The hospitals consistently state there are no remaining therapeutic options. Yet, many patients believe in alternative cures and the ability to try medications that is safe and potentially life saving. Right to Try is typically used for products that have not been brought to market in any capacity, but when your loved one is not getting what they need, why not consider this as an approach to try.

PROTECTION OF A VULNERABLE PATIENT

There are many procedural options inside and outside of the hospital to ensure a patient is protected. 

ADA REASONABLE MODIFICATION

The Americans with Disabilities Act (ADA) prohibits discrimination against those with physical, psychological, and cognitive disabilities. It protects any impairment that significantly affects a major life activity, such as learning, communicating, seeing, caring for oneself or sleeping. Request a reasonable modification for a support person to be present with your loved one, if he/she is considered disabled by the ADA.

LIABILITY WAIVER

An agreement to waive liability from the hospital may empower the hospital to agree to provide the care you are seeking for your loved one.

SECLUSION OF PATIENTS- REQUEST FOR HOSPITAL INFECTION CONTROL POLICY

The CDC states viral replication doesn’t typically occur in Covid patients 10 days after onset of symptoms.  Many State Departments of Health have the same guidelines- 10 days following onset of symptoms. Hospitals are keeping patients secluded for far longer than this time frame, yet hospitals are not providing patients with the hospital seclusion/isolation policy that is superseding state guidelines. A patient must not be expected to comply with an arbitrary policy.

Utilize this letter to send by email to the compliance officer at the hospital to formally request a copy of the infection control policy that supersedes CDC and State guidelines. If they cannot provide the policy, (or a court order to seclude), they cannot seclude your loved one.

If the compliance officer doesn’t respond, you have grounds to bring a compliance complaint, and the state hospital licensing board should know of this as well.

REQUEST FOR PRAYER WITH HOSPITALIZED LOVED ONE

Hospitals must accommodate a patient’s right to worship with their loved ones. Document your request in writing.

ETHICS CONFERENCE

When Doctors say there is nothing else that can be done- That there are no remaining therapeutic options, yet the patient believes in life, and trying everything to save a life. This presents an ethical dilemma. Hospitals must provide patients/MPOA an ethics conference if there are ethical issues at hand. If they don’t there can be grave consequences for the hospital. 

Make the hospital schedule it so you are prepared. This is your conference. It is not reasonable to think an ethics conference can be completed on the spot when the ethicist calls you. Schedule it, make sure you have all of the patient medication information, and your goals in order. If you need expert information to back you up, we can help provide. 

If a hospital denies a patient their right to an ethics conference, they can be reported to their accreditation entity (e.g. Joint Commission), which affects the hospital’s state licensing. 

LITIGATION

Litigation can be considered if your loved one is not receiving the care they deserve. Many families have had success getting Ivermectin ordered by a Judge. You will likely need an attorney in your state (to serve as local counsel) and you may consider also retaining an expert on this specific issue, and that person may be licensed in another state. Recently, sadly, we have experienced many who file a lawsuit are then punished further by lack of care in hospital. If possible, it is our opinion that it is better to find a way to get your loved-one out of the hospital.

PATIENT’S RIGHTS

There are Federal and State laws that protect patients. Start with the hospital’s own Patient Bill of Rights, Policies & Procedures, and Bylaws. Then check your state laws protecting Patient Bill of Rights. Some examples of these rights are, the right to medical records, the right to not be secluded, the right to adequate care, etc.) The Federal government has purported to waive some of patient’s sacred rights as it relates to hospital CMS standards, however patient rights are in most cases protected by state law, and within the hospital’s own bylaws.

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