Your father had a stroke on Tuesday night. By Wednesday morning, the doctors were asking about a feeding tube, and your father couldn't answer. You and your two sisters disagreed, and no one knew what he would have wanted. Nothing had been written down.
A health care proxy is a simple step that can prevent that kind of moment. Here's how it works.
What a health care proxy is
A health care proxy is someone your parent trusts to make health decisions for them if they're unable to do so1. The proxy is named in a legal document usually called a durable power of attorney for health care1. Depending on the state, the person may be called a health care agent, surrogate, attorney-in-fact or representative, and the document may be called a health care proxy form or be part of a combined advance directive.
The proxy steps in only when your parent can't make or communicate decisions, such as during unconsciousness, advanced dementia, or a serious illness. As long as your parent can decide for themselves, they remain in charge. A proxy may be needed for a few days after surgery or for years with dementia.
Proxy vs. living will
Advance directives are legal documents that let your parent spell out decisions about end-of-life care ahead of time1. A living will says which treatments your parent wants if they are dying or permanently unconscious, such as breathing machines, dialysis, resuscitation, tube feeding and organ donation1. A health care proxy is a person, not a list. The proxy can respond to situations a living will doesn't anticipate, talk with doctors, and weigh options as things change.
Most people benefit from both: a living will to state their wishes, and a proxy to speak for them. Many state advance directive forms combine the two. See advance directive vs. living will and DNR vs. POLST for related documents.
What a proxy can decide
Depending on the document and state law, a proxy can generally talk with doctors, review medical records, consent to or refuse treatments and tests, choose doctors and facilities, decide about hospice or palliative care, and make decisions about life-sustaining treatment. Some states require specific language before a proxy can refuse tube feeding or certain treatments, so read the form carefully.
A health care proxy is not the same as a financial power of attorney. The proxy decides about medical care; a financial agent handles money, bills and property. Your parent can name the same person for both or different people. See power of attorney for an elderly parent.
Choosing the right person
The best proxy isn't always the oldest child or the closest relative. Your parent should choose someone who knows their values, will follow their wishes even if they would choose differently, can handle stress, and can speak up firmly to doctors and family2. The person should be willing to take on the role and reachable in an emergency. Living nearby helps but isn't required; see long-distance caregiving.
Your parent should also name at least one alternate in case the first choice can't serve. Many states don't allow your parent's doctor or the staff of a care facility to serve as proxy unless they're a relative. Naming co-proxies who must agree can cause delays, so many advisers suggest one primary proxy with backups.
How to set one up
Each state has its own rules for advance directives. Many states have a standard form that your parent can fill out without a lawyer. Forms are often available from the state health department, hospitals, the area agency on aging, or state bar associations; find local help through the Eldercare Locator3. Requirements usually include signing in front of witnesses, a notary, or both. Witness rules vary, and some states don't allow the proxy or relatives to be witnesses.
An elder law attorney can help, especially if your parent has a complicated situation, owns property in more than one state, or wants to combine documents with estate planning. See elder law attorneys. A proxy form signed in one state is often honored in another, but it's wise to review documents after a move.
Your parent must have capacity
Your parent has to understand what they're signing for a health care proxy to be valid. If your parent is in the early stages of dementia, act soon, while they can still make and explain the choice. A doctor's note confirming capacity at the time of signing can help prevent challenges later. See early signs of dementia.
If your parent can no longer make decisions and has no proxy, state law usually names a default surrogate, often a spouse, then adult children, then other relatives. When family members disagree or no one qualifies, a court may need to appoint a guardian, which takes time and money. See guardianship of an elderly parent.
Talk about wishes now
A proxy can only follow wishes they know. The most important part of naming a proxy is the conversation. Talk with your parent about what matters most: being comfortable, being at home, living as long as possible, avoiding machines, being able to recognize family. Ask how they feel about resuscitation, breathing machines, feeding tubes and hospital stays if they were seriously ill and unlikely to recover. Ask about religious or cultural beliefs that should guide care.
These conversations aren't one-time events. Wishes can change after a diagnosis or a hospital stay. Revisit them every year or two and after big health changes. Some families use a holiday visit or a birthday as a reminder. If your parent finds it hard to talk, start with a story about someone else or a question like, 'What would you want me to know if you got really sick?'
Share copies
A proxy document in a locked drawer won't help in an emergency. Give copies to the proxy and alternates, your parent's doctors, and the hospital where your parent usually goes. Ask that it be scanned into the medical record. If your parent lives in assisted living or a nursing home, give the facility a copy. Keep a photo of the document on your phone. Some states have advance directive registries. Tell other family members who the proxy is so there are no surprises.
A HIPAA authorization lets doctors share information with family even before a proxy is needed. See HIPAA authorization for a parent.
If you're the proxy
Being a proxy is a serious responsibility. Your job is to decide as your parent would decide, based on what you know of their wishes and values, not what you'd choose for yourself. When wishes aren't clear, decide based on your parent's best interests. Ask doctors about the likely outcomes, risks and benefits of each option, and whether a palliative care team can help. See hospice vs. palliative care.
Keep family informed, but remember that the decision is yours to make. It's normal to feel guilt or doubt. Hospital social workers and chaplains can help, and many families find comfort in knowing they followed their parent's wishes.
When family disagrees
Family disagreements are one of the main reasons to name a proxy. When there's no proxy, siblings may each feel they should decide. When there is one, the proxy speaks for your parent, but ongoing conflict can still be painful. A family meeting with the care team, a hospital ethics consultation, or a mediator can help. Writing wishes down in a living will gives the proxy something concrete to point to.
Changing or revoking a proxy
Your parent can usually change or cancel a health care proxy at any time while they have capacity, by signing a new document or telling their doctor in writing. When they do, collect the old copies and send new ones to everyone who had the old version. Review the proxy after a divorce, a death, a move, or if the named person can no longer serve.
Common mistakes
Families often wait too long, until a parent no longer has capacity. Others name a proxy but never discuss wishes, or choose someone who lives far away and can't be reached. Some forget to name an alternate. Others assume the next of kin will automatically be in charge, which isn't always true. And many people sign a form but don't give copies to doctors. Each of these is easy to fix with a little planning.
Planning with dementia in mind
Dementia raises special questions for a proxy, because decisions may stretch over years rather than days. Talk with your parent early about what they'd want as the disease progresses: a move to memory care, hospital trips for infections, feeding by hand rather than by tube, and when to choose comfort-focused care. Writing these wishes down helps the proxy later. See stages of dementia care needs and hospice for dementia.
An example
After her father's stroke, Maya realized how close her family had come to a bitter fight. When her mother turned 78, Maya sat down with her and the state's advance directive form. Her mother named Maya as her health care proxy and Maya's brother as the alternate, and wrote in her living will that she didn't want a feeding tube if she had no chance of recovery. Two witnesses signed. Maya gave copies to her mother's doctor and brother. This is an illustration; rules vary by state.
