I Need Help When an Advance Directive Isn’t Being Followed

Ask Why It Isn’t Being Followed

Ask:

• Does the team believe the directive is valid?
• Does it apply to this particular decision?
• Has the person’s condition changed in a way that affects whether the directive applies?
• Is there disagreement about what it means?
• Is there disagreement about who has authority to decide?
• Is another current medical order affecting the decision?
• Is the clinician saying the requested treatment can’t or shouldn’t medically be provided?

Then say:

“Please explain why the directive isn’t being followed, and document that explanation in the medical record.”

If it refuses a treatment being given or planned:

“The directive says they don’t want [treatment]. Why is this being given or planned, and who can review that decision now?”

If you’re told the directive doesn’t apply, ask why.

Ask Who Can Review the Decision Now

In a hospital, that may be the attending clinician, charge nurse or unit leadership, patient advocate, ethics service, or a care conference.

If hospice is involved, call the 24-hour number and ask for the nurse, social worker, or medical director.

“Who can review this today, before the treatment decision moves forward?”

Don’t wait for the next routine appointment or family meeting if the decision may happen first.

If This Is Happening in a Nursing Home or Other Facility

Ask who can review the directive and the current care decision in that setting. That may include the nurse responsible for the person, the director of nursing, the treating clinician or medical director, or the administrator.

If it stays unresolved, ask the Long-Term Care Ombudsman what review or complaint route is available.

“I’ve already raised this with the facility. The directive or recognized decision-maker still isn’t being followed. What can happen next?”

If the Problem Is Who Has Authority

If the person can’t make this particular decision and someone else is acting for them, ask whether the care team recognizes that person as the decision-maker.

If not, ask:

“What document or rule are you relying on to decide who has authority?”

If authority remains disputed or unclear, use I Need Legal Help →

If the Directive Doesn’t Clearly Fit This Situation

Ask what decision has to be made now, and what the directive says that may apply to it.

If the real problem is deciding what best fits the person rather than whether the document is being followed, use I Don’t Know What They Would Want →

If the real problem is choosing among medical options, use I Need Help Making a Medical Decision for Someone Else →

If the Disagreement Is About What Medicine Can Provide

An advance directive guides decisions among treatments that are medically available. It doesn’t automatically require a clinician or hospital to provide a treatment they believe isn’t medically appropriate.

“Is the problem that the directive isn’t being followed, or that the treatment it appears to request isn’t being offered?”

Then ask why the treatment isn’t being offered, what alternatives remain, whether another clinician can review the decision, and whether transfer to another provider or facility is possible.

If an Emergency Medical Order Is Involved

A DNR, POLST, MOLST, MOST, or similar medical order is different from an advance directive and may give clinicians or emergency responders more specific instructions for an emergency.

Ask:

“Which document or medical order is guiding this decision right now?”

If the person receives care across state lines, ask whether the advance directive and the emergency medical order are each recognized there. Ask about them separately.

Before You Rely on the Plan

Confirm:

• the directive is in the medical record and the treating clinician has reviewed it
• you know exactly why it isn’t being applied, and that explanation is documented
• you know who’s reviewing the disagreement next
• you know whether the treatment will continue, pause, or happen before the review is finished
• the right decision-maker is named in the chart