Making Medical Decisions When a Parent With Dementia Can No Longer Decide

At some point in many families’ experience with dementia, a doctor asks for a decision and the person it concerns can’t give one. If your parent signed a healthcare proxy years ago, the path is clear. If not, families often discover that no one automatically has the right to decide, or that the right depends on a state law they’ve never read. This guide explains how that works, with Texas as a worked example because its statutes spell the rules out clearly. Your state’s rules will differ, so use this as a map of the questions to ask, not as legal advice.

What should we look for first?

Before relying on any default rule, look for a document or a court order that already names a decision-maker:

• A medical power of attorney (healthcare proxy). A document in which the person named an agent to make health care decisions. In Texas, the statute says an agent decides according to the agent’s knowledge of the person’s wishes, including religious and moral beliefs, or, if the wishes are unknown, according to the person’s best interests. See advance directives, living wills, and healthcare proxies
• A directive or living will stating treatment preferences
• A guardianship order, if a court has already appointed a guardian; see guardianship and conservatorship for adults

Check files at home, ask the person’s doctors and lawyer, and ask other relatives. If your parent is still partly able to take part, the question of whether they can still sign a proxy is separate; see can someone with dementia still sign a will or power of attorney?

What if there is no document at all?

Then the law of your state fills the gap. Most states have what are called default surrogate (or “surrogate consent”) laws that say who may make health care decisions for a patient who can’t. The American Bar Association’s Commission on Law and Aging keeps a chart of them. One published analysis describes the common pattern: most state laws set a hierarchy of authorized decision-makers, starting with the spouse and descending through adult children and other relatives, while two states (Colorado and Hawaii) at the time of that analysis used a different model that lists interested persons without a strict order. Older versions of the ABA chart show that some states also list an adult in a spouse-like relationship.

The practical lesson: who counts, in what order, and for which decisions, depends on your state. Ask the hospital social worker or the facility which law it applies, and ask an elder law attorney if there is any doubt.

How does it work in Texas?

Texas has two separate rules, and families often assume there is only one.

Consent to ordinary treatment (Chapter 313)

Texas’s Consent to Medical Treatment Act applies when an adult patient of a hospital, a nursing home, or a home and community support services agency is incapacitated or can’t communicate, and has no legal guardian or medical power of attorney agent reasonably available. In order of priority, an adult surrogate who has decision-making capacity, is reasonably available, and is willing may consent on the patient’s behalf:

1. The patient’s spouse
2. The patient’s adult children
3. The patient’s parents
4. The patient’s nearest living relative

Other points in the statute:

• Treatment consented to this way “must be based on knowledge of what the patient would desire, if known”
• The attending physician must document the patient’s incapacity and the proposed treatment in the medical record, make a reasonably diligent effort to contact people eligible to serve, and record the consent
• A surrogate who consents in good faith is not subject to criminal or civil liability for doing so
• A surrogate may not consent to voluntary inpatient mental health services, electroconvulsive treatment, or the appointment of another surrogate
• Any dispute about who has the right to act as surrogate may be resolved only by a court with probate jurisdiction

Notice what the statute names: hospitals, nursing homes, and home and community support services agencies (and jails). It does not name assisted living or memory care facilities, so how it applies to a person in assisted living is a question for the facility and an attorney.

Decisions to withhold or withdraw life-sustaining treatment (Chapter 166)

This is the part that matters most in advanced dementia, and it works differently. The Consent to Medical Treatment Act says it does not authorize a decision to withhold or withdraw life-sustaining treatment. That kind of decision falls under the Advance Directives Act. Two definitions in that law matter here:

• Life-sustaining treatment includes artificially administered nutrition and hydration, meaning nutrients or fluids by a tube. So a decision about a feeding tube is a life-sustaining treatment decision in Texas. See feeding tubes and dementia
• The rule applies to a “qualified patient,” one with a terminal or irreversible condition that the attending physician has diagnosed and certified in writing. An irreversible condition is one that may be treated but is never cured, leaves a person unable to care for or make decisions for themselves, and is fatal without life-sustaining treatment. The statute’s own sample directive notes that serious brain disease such as Alzheimer’s dementia may be considered irreversible early on and terminal later. A patient admitted to hospice services through a licensed home and community support services agency is presumed to have a terminal condition

For a qualified patient who has no directive and can’t communicate, the law says:

• The attending physician and the patient’s legal guardian or medical power of attorney agent may make the treatment decision, including withholding or withdrawing life-sustaining treatment
• If there is no guardian or agent, the attending physician and one person, if available, from this list, in this order, may decide: the patient’s spouse; the patient’s reasonably available adult children; parents; nearest living relative
• The decision must be based on knowledge of what the patient would desire, if known, documented in the medical record, and signed by the attending physician
• If there is no guardian and no one on the list is available, another physician not involved in the patient’s treatment, or a representative of the facility’s ethics or medical committee, must concur
• The fact that a person never signed a directive does not create a presumption that they don’t want treatment withheld or withdrawn
• Someone on the list who wants to challenge a decision must apply for temporary guardianship in court, and the court may waive fees
• If the attending physician refuses to follow a decision to withhold or withdraw treatment, an ethics or medical committee reviews the refusal, treatment continues during the review, and the facility helps look for a physician or facility willing to comply

In short, in Texas, “who can decide” and “what they can decide” are not the same question, and a spouse or adult child’s authority to consent to a procedure does not automatically extend to declining life-sustaining treatment. Doctors and hospital staff apply these rules daily, so ask them which one they’re relying on.

How should a surrogate decide?

The standard in the Texas statutes, and the one most people recommend, is what the person would want, not what you would want for yourself or what is easiest for the family. Where the person’s wishes are unknown, the medical power of attorney statute turns to the person’s best interests. To learn the person’s wishes:

• Think about what they said and did over the years: past conversations, how they reacted to other people’s illnesses, what they feared
• Consider their religious and moral beliefs
• Look for any written or recorded statement, however informal
• Ask other people who knew them well

If you aren’t sure, it can help to say out loud to the care team: “Here is what we think she would want, and why.”

What if my siblings and I disagree?

This is common, and the law only goes so far:

• The Texas statutes list “adult children” (Chapter 313) and “reasonably available adult children” (Chapter 166) without spelling out in the current text how to break a tie. Other states’ laws differ on this point
• Under Chapter 313, a dispute over who may act is resolved only by a court; under Chapter 166, someone who wants to challenge a decision must go to court for temporary guardianship
• Before it gets there, ask the hospital for an ethics consultation, a palliative care consult, or a family meeting with the physician and a social worker. A neutral person can help clarify what the person would have wanted
• If a court has to decide, see guardianship and conservatorship for adults

What are practical steps for the next week?

1. Ask the care team: “Is my parent considered to lack decision-making capacity for this decision? Who do you recognize as the decision-maker, and under what law?”
2. Gather documents: any proxy, directive, or guardianship order, plus a list of relatives
3. Ask your parent to take part as far as they can. Capacity can vary by decision, and a person who can’t weigh a complex choice may still express preferences
4. Write down what you decide and why, and give the facility a copy
5. Talk to an elder law attorney if there is a disagreement, no document, or questions about finances or housing, which these medical rules don’t cover

Planning ahead, for your own sake

If you are the parent in this story, or might be, the simplest protection is a medical power of attorney, signed while you still can, and a conversation with the person you name. See planning ahead after an early dementia diagnosis. Record your wishes in a Final Day Plan so your own family doesn’t have to guess.

This is general educational information, not legal advice. State laws on medical decision-making differ, and Texas is used here only as an example; an elder law attorney in your state can address your family’s situation.