What it means to be a healthcare proxy

Your role as healthcare proxy starts when the person can’t make medical decisions. This assessment can only be done by a healthcare provider. You then make the healthcare decisions as needed. You do this by carrying out the person’s wishes. These wishes are noted in their advance care planning documents. These list what kind of treatment the person wishes to have or not have. You may need to put aside your own values and opinions to carry out the person’s wishes. This may include whether to have treatments to keep them alive.

Documenting end-of-life wishes

As a healthcare proxy, ask the person to talk about their wishes while they are able to. They can do this with their healthcare provider. They can then list the wishes as a medical order. The provider can help the person complete the form. The forms are known by different names depending on the state. But they are meant to be portable, or "traveling documents." They should be with the person at all times. You may hear the form called:

• MOLST (medical orders for life-sustaining treatment)

• POLST (physician orders for life-sustaining treatment, or portable medical orders)

• MOST (medical orders for scope of treatment)

• POST (physician orders for scope of treatment)

• TPOPP (transportable physician orders for patient preferences)

The POLST form documents the person’s wishes during a medical emergency if they have an advance, serious illness. It's not tied to a certain healthcare provider or facility. It's different than a living will. The form is an order written by a healthcare provider to follow state regulations. To complete one, the person must tell their wishes to their healthcare provider. If the person can’t make their own decisions, then their healthcare proxy does it.

Carrying out your role

Your duties depend on what the person’s advance care planning documents say. If the person is generally healthy without a serious illness, they may have a living will. This is a document that says what kind of medical care they want if they are too ill to make that decision. Examples are feeding tubes or breathing machines. The living will does not go into effect unless they are too sick to decide. If they are seriously ill, do they have a POLST form available?

Your duties may also depend on state law. In general:

• Talk with the person before accepting a role as a proxy. Be sure you know their wishes. Ask questions. This will help you be their voice if and when it's needed.

• Be sure that the person’s healthcare team knows that you are their proxy. Carry a copy of the document and proof of your identity.

• Make sure the healthcare team has a copy of the advance care planning documents.

• Talk with the healthcare team. Ask questions as often as you need. Stay informed about the person’s condition.

• Ask for any help so you can understand the medical situation. Ask about the person’s condition and prognosis. Ask about risks and benefits of tests and treatments. Find out all the facts and choices.

• Speak on the person’s behalf with the healthcare team when needed.

• Talk with family members and keep them informed. Make copies of the POLST form. Carry the person carry them with them at all times. This is important if the person is released from the hospital and the form contains a "do not resuscitate order" (DNR). Many home-bound people pin the form to their shirt and also put copies in their home where it will be easily seen. This might be on the inside of the front door or on the refrigerator. This may seem extreme, but fast access to the form can stop unwanted resuscitation (CPR) efforts by emergency workers. Emergency workers legally must resuscitate the person if they don't have access to written DNR orders.

• Know your rights. You have the right to ask for information. You can ask for consultations and second opinions. You have the right to request or refuse treatment for the person. You may be able to review their medical chart. You can have the person transferred to another facility. You can also request a new healthcare provider for them. Ask a legal advisor if you are not sure what your rights are at any time.

When it’s time to make decisions

If the person’s wishes are clear in the advance care plan documents, ask for them to be carried out as noted. Talk with the healthcare team if they are not clear. Listen to the team’s advice. Talk with a spiritual advisor or counselor. It may be hard for you to make a decision at times. You may feel sad or overwhelmed about a decision. Being a healthcare proxy is not an easy role. But it's an important one. Remember that the person trusts you to carry out their wishes.

If you need help

• Ask the healthcare team if you have trouble with a decision. The healthcare team will help you.

• Encourage the person you are helping to speak with their provider about their end-of-life wishes, including whether to use CPR. The provider can help them fill out the form.

• You may need help with family conflicts. Ask the hospital or clinic social worker, ethics consultant, or a spiritual advisor for help.

• If you are having trouble talking with the healthcare team while the person is in the hospital, reach out to the patient relations department. Or ask to speak with the hospital ombudsman or ethics committee.