Advocating for Yourself in a Medical Setting

By Teresa Sullivan

From PHN Issue 38, Fall 2018

Principles:

You have a right to information.
You have a right to be treated with dignity and respect.
You are entitled to a good relationship with your doctor or health care provider.
You have a right to make decisions that affect your health care and your life.
You have a responsibility to be effective.
You will be more effective if you have a strategy and a plan.

Effective advocacy in the doctor’s office:

It helps to be organized.
Write down your questions on a piece of paper and bring it to your appointment.
Be polite, but be persistent.
Form alliances by being respectful to staff who treat you with respect and dignity.

Remember . . .

You don’t want to be seen as a “problem patient.”
To be effective, it’s important to remain as calm as possible when asking for what you need.
When filling out a sick call request, make sure to include details about what it’s for and what matters to you. This could be that you are low on meds, in pain, or having side effects, new symptoms or a new illness. Describe anything new that’s happening that’s not normal.

How to get your medicine:

Make sure that you know what all your medications are. If you don’t know, ask a health care provider during a visit.
Ask about what side effects to expect and what you can do about them.
During the visit, if you are low on your medications, inform the health care provider.
Your medications should be ready for you at the medicine window. If they are not ready when you need them, or if staff try to give you the wrong meds, put in a request to see the doctor. It’s important to be polite even when you are upset, because you are more likely to get what you need if you are polite.
If your sick call request is not answered within a few days, fill out another sick call request.

In the hospital:

Make sure you ask any questions you have, and ask the doctor to explain anything they say that you don’t understand. You can ask, “Could you please tell me what that means, so I can take better care of myself?”

Pain management:

The rule is: When people are really sick, pain can be controlled.
There are many drugs that can be used, some opioids (such as morphine, fentanyl and oxycodone) and some not.
People who have previous issues with substance abuse should talk to their doctors about this now, or soon.
You have options — there are other painkillers besides opioids that work just as well.

Planning documents for the end of life:

Advance directives say what you want done in the event that you cannot speak for yourself.
The paperwork is different for each state, so it’s important to make sure that you have completed the correct paperwork for the state where you are being held. If you are in a federal facility, you need the paperwork for the state where your facility is located.
Living wills are a kind of advance directive, usually written to say you do not want extraordinary measures taken.
You may want to consider giving a loved one on the outside power of attorney. This allows them to make legal and financial decisions (and decisions about your children) for you if you cannot speak for yourself. However, this could allow the person to make decisions you disagree with, so it’s wise to be very careful about what you sign. One benefit of granting your loved one power of attorney is that they can speak to medical staff to make sure you get the care you need. And, should something happen to you, they can make sure to receive your body.
You cannot predict every scenario, but you can talk with a loved one so they know what you want done.

Some issues:

Your life partner may not be “traditional.” You may need to educate staff on your rights for your partner or chosen family to be accepted.
If you give someone power of attorney, it doesn’t have to be a family member. Sometimes family members are stressed out enough already.
Take time to make decisions about these important documents. It doesn’t have to take a week — these documents can take months to complete.
If you can, have four copies of each document notarized, and send one copy to the prison warden, one to your lawyer if you have one, and one to a trusted family member or friend on the outside if you have one. Keep one for your records.

Decisions when your life is threatened:

The goal is for you to decide what you want.
It is important to say that you do want treatment or do not want whatever extra measure the medical provider is taking.
Different people want different things.
The goal is to have the amount of control you want to have, now!
You can get these documents by writing to your state’s department of health or the AARP:

AARP

601 E Street, NW

Washington, DC 20049