ABCs of advance care planning

Welcome to the CAKE glossary, where we explain the alphabet soup of advance care planning!

Advance care planning: planning for how you want your legal, financial, and medical decisions handled in the future. End-of-life planning is only a subset of advance care planning, which also includes long-term care and aging.

Advance directive: a generic term for any document that gives instructions on what to do if you can’t make decisions. In the context of healthcare it usually has 2 parts:

  1. A healthcare proxy (who you want to make decisions)
  2. A living will (what you want those decisions to be)

Laws differ from state to state, so you should sign your state-specific advance directive (you can find copies here.)

Everyone should have a…

Healthcare proxy (HCP): a person you name to make medical decisions for you in the event that you cannot speak or make decisions for yourself.

  • Also known as:
    • healthcare power of attorney
    • healthcare agent
    • healthcare surrogate
    • healthcare representative
    • healthcare attorney-in-fact

The most important part of having a healthcare proxy is talking about your preferences. Otherwise, even if you’ve named a proxy, they may have no idea what you want. (If you want help defining what’s important to you or figuring out how to have this conversation, ask us about a personal consultation or send us a message!)

  • When does the HCP take effect? The proxy becomes active only if a doctor determines that you are not able to make or communicate decisions (this is usually what people mean by “incapacitated”). It doesn’t have to be because of a terminal illness—it can also be a temporary situation, before you regain the ability to speak for yourself.
  • What if I change my mind? Communicate this verbally or in writing to your family. Fill out a new form, get rid of old copies, and make sure your doctor, lawyer, and other people have an updated version.
  • Does a healthcare proxy have any claim or say over financial assets? No, the proxy only has a role in medical decision-making.
  • What happens if I move to another state, or have to go to a hospital in another state? Your healthcare proxy should generally be recognized if it complies with the other state’s laws. If you’ve moved permanently you might want to fill out your new state’s forms just to be on the safe side!
  • Does my HCP have to be in the same state? No.

Living will: A living will is a document that states what kinds of treatments you do and don’t want

  • Is it legally binding?: Massachusetts, Michigan, and New York are the 3 states where a living will is not legally binding. Even in these states, it is worth completing a living will as a useful guide for your healthcare proxy, family and friends, and medical team to know what you’d want.
  • When does it take effect?  Like the healthcare proxy, a living will is referenced when doctors judge that you are not able to make your own decisions. The living will usually applies to a specific medical condition or situation, such as being terminally ill or permanently unconscious. If a person is likely to recover, your healthcare proxy can be invoked but the living will may not go into effect.
  • What goes into a living will? Living wills can express your views on long-prolonging treatments—like CPR, breathing machines or ventilators, and feeding tubes. They can also discuss other kinds of treatment you would accept or reject like dialysis or blood transfusions, and what to do in situations of coma or serious injury. Some living wills discuss views on organ donation.
  • What if I change my mind? Like the healthcare proxy form, you can change it at any time, get rid of the old living will, and update your loved ones, doctors, and lawyers

People with a serious illness should also think about a…

POLST = Physician / Provider Orders for Life-Sustaining Treatment

Also known as MOLST = Medical Orders for Life-Sustaining Treatment

  • Who should have a POLST/MOLST? People of any age who have an advanced illness or are medically frail and want to express their views on life-sustaining treatments, especially if they might worsen or lose decision-making capacity within a year
  • How is this different from a living will or HCP? Your doctor fills out this form with you that states what kinds of treatments you do and don’t want and under what conditions. It goes into effect when signed and does not require a person to have lost decision-making capacity. It’s usually more specific than a living will — it can cover CPR, mechanical ventilation, going to the hospital or Emergency Room, tube feeding, antibiotics, and pain medications, among other issues.
  • Where to put it? This is a reference during emergencies and should be posted somewhere in your house or living space visible to paramedics.

A POLST/MOLST usually includes discussion of code status… what is that?

Code status: the term doctors use for what a patient wants in the event of a “code”—their heart stops, breathing stops, or another situation that would require cardiopulmonary resuscitation (CPR).

  • Full code: this is the default for all patients, and means that all possible measures will be taken including CPR and intubation and mechanical ventilation
  • DNR/DNI = Do Not Resuscitate/Do Not Intubate.
  • This is a medical order written by your doctor that specifies that you don’t want to get CPR (DNR) or to have a breathing tube put in in order to go on a breathing machine (DNI). It is different from a living will in that it is more circumscribed. Each time you are admitted to a hospital, a doctor should confirm your code status.
  • This should be a carefully considered decision that you have informed your loved ones about and where you understand the medical outlook and your options.

You may have heard about the different kinds of healthcare power of attorney, so we’ll touch on that quickly here:

Power of attorney: a legal document that names a person to make decisions for you under certain conditions. The person you name is called the agent.

The various types of power of attorney differ in when they take effect:

  • Durable power of attorney: becomes effective once you sign but the agent only has authority if you are judged incapable of making decisions. The power of attorney stays in effect until you die. This is the recommended type of POA in most cases of advance care planning as it ensures your designated agent can act without having to wait for any legal proceedings. As long as you are mentally competent you can change or revoke the POA.
  • Non-durable power of attorney: this has less to do with advance care planning, as it is void if you become incapacitated or unable to make decisions. It can be useful if you need someone to stand in your place for a specific action or time period (for example, signing a contract when you are out of the country).
  • Springing power of attorney: takes effect and “springs” into action under specified circumstances, like if you become ill or are declared incompetent. As you might imagine, this can get tricky depending on how you specify the conditions—it’s not automatic and your designated agent may not be able to act immediately. If there are problems deciding when the power of attorney is initiated, the case may have to go to court and result in delays. You might consider this option if you want to more stringently limit access to your finances or legal matters.

Have other questions or confusing terms? Let us know below and we’ll be sure to add them.

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