Advance Directive During Cancer Care

An advance directive is a legal document. It records your health care decisions ahead of time. MedlinePlus describes it that way, and gives the reason it exists. It speaks for you when you cannot.

In cancer treatment, the moments it covers are specific and knowable. General anesthesia. A stretch in intensive care with a breathing tube. Sudden confusion during an infection. A stroke. In each of those, someone gets asked a question about you. You will not be able to answer it.

People say "advance directive" as if it were one form. It is usually two.

The living will records what you want done. MedlinePlus lists the usual contents. Dialysis, breathing machines, resuscitation, tube feeding, and organ and tissue donation. NCI adds the withholding of food and fluids.

The durable power of attorney for health care records who decides. NIA and NCI both call this naming a health care proxy. You may also see the words agent, surrogate, or representative.

You can complete one or both. NIA notes what the proxy document adds. It covers situations no written instruction could have predicted, which is most of them.

NIA turns proxy selection into questions you can actually answer:

• Am I comfortable talking with this person about my wishes and priorities for care?
• Do I trust this person with my life?
• Can they hold up against conflicting opinions from family, friends, and clinicians?
• Do they live near me, or would they travel to be here?

That third question decides more cases than the others. In a real crisis, the proxy often has to hold a line. The people pushing back will be people who love you.

NIA gives three steps worth following exactly. Name an alternate, in case your first choice cannot be reached. Ask the person straight out whether they are willing to do it. Then plan to talk with your proxy at least once each year about your wishes.

This is the part almost nobody knows. Federal rule 42 CFR 489.102 puts duties on providers that take Medicare and Medicaid. What follows is a plain reading of that rule and of Medicare's published coverage as they stood when this page was last checked; both can be amended, both cover only the entities named in them, and neither overrides your own state's law. This is general information, not legal advice. If something turns on it, read the linked regulation and get advice where you live.

They must hand you written information about your rights under state law. That covers the right to accept or refuse treatment, and the right to make an advance directive. They must also give you their own written policies on carrying those rights out.

The timing is set by setting:

• Hospitals — at the time of admission as an inpatient
• Skilled nursing facilities — at admission as a resident
• Home health agencies — before you come under the agency's care
• Hospice — at the time you first receive hospice care
• Rural emergency hospitals — at registration as a patient

They must also note it in a prominent part of your medical record. The rule says to document whether or not you have an advance directive. And they may not condition your care on whether you have one.

The same rule holds something you should look for. Some providers cannot carry out parts of a directive on grounds of conscience. If so, they must give a clear and precise statement of that limit.

That statement has to separate two things. Objections held by the whole institution, and objections held by one physician. It must name the state legal authority behind the objection. It must also list which conditions or procedures are affected.

In plain terms: some facilities will not honor parts of some directives. They are required to tell you which parts, in writing, on the way in. Read that page. The rule also says you can file complaints with your state survey and certification agency.

Providers must also train their own staff on these policies. They must run community education on advance directives, and document that they did.

NCI states that each state has its own laws, and that a document accepted in one state may not be valid in another. NIA says each state offers its own forms free of charge.

In cancer care this matters more than average. People travel to big centers for second opinions, surgery, transplant, or trials. NIA advises preparing directives on the form for each state where you spend real time.

NCI notes where to get state forms. They are available through the National Hospice and Palliative Care Organization. NIA adds that some states run registries, so the document can be pulled up fast.

A form in a drawer does nothing. NIA says to make copies and store the original safely. Give copies to your health care proxy, your providers, and your lawyer.

For a cancer patient, build that list concretely:

• The oncology practice, for the chart used at every infusion visit
• The hospital system where admissions happen, which is often a separate record
• The surgeon's office before any operation
• The proxy and the alternate, both
• A copy that travels with you to appointments

Ask the oncology office to confirm the document is scanned in, and ask where in the record it lives.

Medicare Part B covers voluntary advance care planning. Medicare.gov states you pay nothing during the Welcome to Medicare preventive visit. The same holds at a yearly wellness visit. Your clinician has to accept assignment.

Billed as a separate service, the Part B deductible applies. So does 20% coinsurance of the Medicare-approved amount. Ask to attach the discussion to a wellness visit if timing allows, and check the current position with your plan or on Medicare.gov before you count on it.

NCI notes who can help you fill these out. Doctors, nurses, and social workers all can. Most facilities have staff assigned to it, and that help is usually free.

NCI advises completing directives while you are healthy rather than during a crisis. In cancer care, treat these as scheduled review points:

1. Before any operation, including port placement
2. Before starting a new line of treatment
3. Before a stem cell or organ transplant
4. When the goal of treatment shifts from cure to control
5. When hospice is being discussed
6. When your proxy's own health, address, or phone number changes

At each of those points, ask one more question. Is a portable medical order such as a POLST or MOLST now appropriate? These go by different names and carry different legal weight from state to state, and not every state has one. That is a separate document from an advance directive. It is meant for people who are seriously ill.

DNR Orders and Cancer Care covers the resuscitation order and how it differs from these documents. Palliative Care and Hospice Care explain the services these decisions often intersect with. Understanding Your Health Insurance covers the coverage side.

• National Institute on Aging — Advance Care Planning: Advance Directives for Health Care
• National Institute on Aging — Choosing a Health Care Proxy
• National Cancer Institute — Advance Directives
• MedlinePlus — Advance Directives
• Electronic Code of Federal Regulations — 42 CFR 489.102, Requirements for providers
• Medicare.gov — Advance care planning