Serving as a surrogate healthcare decision maker or healthcare agent can be daunting, especially if you are unsure what to expect or how to prepare.
What is a surrogate healthcare decision maker?
A surrogate decision maker is someone who has been put in a trusted position to make healthcare decisions on behalf of another person, if/when they become unable to make healthcare decisions for themselves. The role may also be referred to as a healthcare proxy, medical power of attorney, healthcare representative, or durable power of attorney for healthcare. Proxies/surrogates are legally designated in an advance directive, which will outline when the authority becomes effective and to what extent (the types of decisions they are able to make). Since surrogates may be called upon to make decisions in a crisis situation, they should confirm you feel comfortable representing and honoring another person’s wishes during challenging times.
What does a surrogate decision maker have the ability to do?
A surrogate decision maker typically has the ability to speak with your healthcare team, make decisions about starting/stopping care, sign healthcare-related consents, documents and take other actions on the ailing person’s behalf, and access medical records.
A surrogate decision maker for healthcare does not have the ability to manage finances, pay bills, or manage personal affairs. A proxy will also not be able to transfer their authority to another person. If you are unable, unwilling, or not available when needed, decision-making authority will transfer to the individual listed as an alternate.
The authority given to a surrogate will be determined by what is included in the advance directive of the person you are proxying for. Many advance directive forms allow people to choose when the authority of the surrogate becomes effective – immediately or once physician(s) have determined decision-making capacity has been lost. Similarly, the advance directive will indicate what authority remains after death, in compliance with state laws.
If I have been selected as a surrogate healthcare decision maker, what can I do to prepare to be a strong advocate?
- Be sure you have all the information needed to make informed decisions. This includes staying current as information about their health condition(s), treatments and medication changes, and most importantly, understanding their wishes for future care.
- Keep a copy of their current advance directive and POLST, if applicable, on hand and be prepared to provide a copy as needed.
- If they request no CPR, or do not resuscitate (DNR), be sure they have a properly signed POLST located in an obvious place, easy to provide in the event 9-1-1 is called.
- Be sure others are aware you are the chosen surrogate decision maker and your information has been provided to important contacts. Ensure you have contact information for loved ones, medical providers, and other important contacts.
- If the person still has decision-making capacity and you are not yet acting on their behalf, look for ways you can 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 person’s wishes.
- Make sure the hospital has the most current copy of the advance directive and POLST for the medical record (do not assume it is already on file).
- Provide your contact information and try to be as available as possible. If the person is unable to make decisions or verbalize their wants and needs, you will need to be at their bedside.
- Don’t be afraid to speak up, ask questions, and be that person’s voice as needed. If more discussion is required, ask for a family or care team meeting. Scheduling a dedicated time to talk can be helpful.
- Determine the best person to keep you informed about their condition (in a hospital, this is not likely to be the doctor; it may be the care manager, bedside nurse, discharge planner, or another member of the team.
- If you need help communicating, making decisions, or getting answers to questions, 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 be heard.
Circumstances when following their wishes may not be possible.
Work with loved ones and the care team to make the best decision(s) you can with the information that is available to you. Sometimes the reality of providing care for a person who requires total assistance, 24 hrs a day, makes that impossible. Sometimes care needs or treatments based on their condition may require a shift in plans. Ensure you discuss all possibilities to empower your decision maker as a proxy in the event shifting care decisions becomes necessary. Some examples follow.
- The person wants to remain at home but requires around-the-clock (24 hour) care, which may not be physically or financially possible.
- The person doesn't want "strangers" coming into the home to help provide care, but you aren't able to provide 24 hour care by yourself.
- The person hopes to die at home but is in such a fragile state and moving them is not possible. So they are faced with the possibility of dying in the hospital (i.e. they wouldn't handle the ambulance ride, wouldn't have access to the care they need, care needs too high, etc.)
- The person prefers to remain in the hospital for their final days, but that is not possible.
- Their advance directive indicates their desire for aggressive, life-sustaining measures but the risks outweigh the benefits (i.e. not a candidate for surgery or IV nutrition/fluids causing more harm than good).
The following are suggested prompts for discussions between the proxy and the person they are representing.
- Nutrition and Hydration: If you can't feed yourself, you do/don't want to be fed artificially or by hand. You do/don't want to be given hydration of any form and medications should be applied in alternate formats like a patch, suppository, or sublingually, if possible.
- Infections: During hospitalization or confinement to bed, you may experience a bed/pressure sore, urinary tract, or other infection like pneumonia. Determine if you do/don’t want the infection treated.
- Supported Breathing: If you are unable to breathe on your own, you do/don't want to be intubated or receive assistance to help you breathe.
- Comfort Care Only: Your care excludes curative or aggressive treatments. The goal is to be kept comfortable during your dying process.
Visit candc.org/eolc/finish-strong-tools for more information on end-of-life planning.
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