Being a Surrogate Healthcare Decision-Maker

Being a Surrogate Healthcare Decision-Maker

Serving as a surrogate healthcare decision-maker, agent, or proxy can be daunting, especially if you are unsure of what to expect. This will help you prepare.

What can you do as a healthcare surrogate or proxy?

You are the one designated and trusted by the patient to make healthcare decisions for them if/when they become unable to speak for themselves. Typically, you can speak with a patient’s healthcare team, make decisions about starting/stopping care, sign healthcare-related consent documents, access medical records, and take other healthcare-related actions on the patient’s behalf. Since surrogates are often required to make decisions in a crisis, make sure you are 100% comfortable representing the wishes of the person you represent even under extreme pressure.

Surrogates do not manage finances or personal affairs. Nor can you transfer authority to someone else. If you are unable, unwilling, or unavailable, decision-making authority will transfer to an alternate designated in advance by the patient.

Your authority is determined by the advance directive of the person you represent. Many advance directive forms allow people to choose when your authority becomes effective, whether immediately or after a physician has determined that the patient has lost decision-making ability. Similarly, the advance directive will indicate what authority you maintain after the patient’s death, in compliance with state laws.

How can I be an effective surrogate healthcare decision-maker?

Be sure you have all the information needed to make informed decisions. This includes staying current about the patient’s condition, treatments, and medications — and most importantly, understanding their wishes for future care.
Understand and use the Vital Questions About Treatments in conversations with the clinical team to get information and evaluate options.
Always keep a copy of the patient’s current advance directive and signed POLST (Physician Orders for Life-Sustaining Treatment) on hand and be prepared to provide copies as needed.
If the person you represent does not want life-extending measures to be taken, make sure they have a valid do not resuscitate (DNR) order in their POLST, and that it is easily located in the event 911 is called.
Be sure others are aware that you are the chosen surrogate decision-maker. Make sure you have contact information for the patient’s loved ones, medical providers, and other important people — and that they have yours.
If the patient still has decision-making capacity, find ways to be a source of support, such as participating in care meetings, taking notes, and coordinating appointments.

What do I do if the person has been admitted to the hospital?

Make sure the care team is aware of the patient’s wishes.
Make sure the hospital has the most current copy of the patient’s advance directive and POLST; do not assume it is already on file.
Provide your contact information and make yourself available. If the patient is unable to make decisions or verbalize their wants and needs, you should be at their bedside if at all possible.
Don’t be afraid to speak up, ask questions, and advocate for your person. If a situation requires more discussion, ask for a family or care team meeting to gain clarity on next steps.
Determine who is the best person to keep you informed of the patient’s condition. In a hospital, this is more likely to be the care manager, bedside nurse, discharge planner, or another member of the team other than the doctor.
If you need help communicating, making decisions, or getting your questions answered, ask for help from the hospital’s patient representative, social worker, chaplain, or other support person.
Remember, in this role, you are an advocate. Don’t be afraid to speak up, ask questions, and make yourself heard. Be assertive as necessary.

Circumstances in which following a patient's wishes may not be possible.

Providing care for a person who requires 24-hour-a day assistance may require a shift in plans. Work with loved ones and the care team to make the best decisions possible with the information available to you. Here are some possible scenarios:

The person wants to remain at home but would require around-the-clock care, which may not be physically or financially feasible.
The person doesn't want "strangers" coming into their home to provide care, but you aren't able to provide around-the-clock care yourself.
The person hopes to die at home, but is in such a fragile state that leaving the hospital is not possible.
The person prefers to remain in the hospital for their final days, but that is not possible based on space, coverage, or health system discharge policies.
The person’s advance directive indicates their desire for aggressive, life-sustaining measures, but the risks outweigh the benefits (i.e., they are not a candidate for surgery, or IV nutrition/fluids would cause more harm than good).

Use these prompts to foster discussions between you and the person you represent while they are still able:

Nutrition and hydration: If you can't eat or drink for yourself, do you want to be fed artificially or by hand? If not, are you comfortable receiving medication through a patch, suppository, or sublingually?
Infections: During hospitalization or confinement to bed, you may experience pressure sores, urinary tract infections, or pneumonia. Do you wish to receive treatment for these conditions?
Supported breathing: If you are unable to breathe on your own, do you want to be intubated or receive breathing assistance?
Comfort care only: Do you want to exclude curative or aggressive treatments and receive only those that keep you comfortable during your dying process?

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