Complete Guide to Advance Care Planning for Family Caregivers

Advance Directive

“Advance directive” is a term that can refer to various types of legal documents that declare an individual’s wishes for their future medical care.

These documents vary from state to state. You can obtain your state’s basic advance directive forms from many health care providers, eldercare attorneys, state health departments, your local Area Agency on Aging or download them from:

• AARP
• CaringInfo
• Prepare

Prepare is a free service that aims to help make medical decision-making easier for people. It can be a good resource for those who need a little help walking through the process.

When creating an advance directive, it's a good idea to consult with your loved one’s doctor, geriatric care manager, or another health care provider who's very familiar with end-of-life matters.

When your loved one creates an advance directive, be sure they:

• Follow their state’s requirements so that the advance directives will be valid.
• Discuss wishes with their health care provider, loved ones, and at least one person who will be able to make decisions for them should they become incapacitated (known as a health care proxy, agent, or representative).

TIP: Medicare pays for advance care planning discussions with the doctor through their annual wellness visit.

Some common types of advance directives are described below.

Who is Advance Care Planning Right For?

Our focus here is on helping family caregivers assist a loved one to complete the advance care planning process, but really, any adult in any stage of health should go through the process of advance care planning. After all, none of us knows when an accident or unexpected event can drastically alter life as we know it!

Unfortunately, when tragedy strikes, families are all too often left struggling to figure out what to do – and often, not everyone is on the same page. Headache and heartache abound when family members disagree about how to handle tough situations.

Advance care planning lets your loved one make their wishes known in the event that they can no longer speak for themselves. It makes it much more likely that they will end up receiving the kind of care that they’d like, and it can alleviate a lot of stress and strife among members of the family.

How to Document Advance Care Wishes

Once advance care decisions have been made, it’s vital to document them in such a way that they'll be honored by healthcare providers and financial institutions, should the need arise. The major documents you should familiarize yourself with are included here.

What is the Advance Care Planning Process?

Helping your loved one with the advance care planning process entails:

• Learning about which decisions may need to be made should they become incapacitated
• Making decisions about possible future care scenarios
• Choosing who can manage finances, if they become incapacitated
• Choosing who can make medical decisions, if they become incapacitated
• Discussing these decisions and wishes with key loved ones
• Documenting the decisions in a legally-binding format
• Storing the original documents in a safe-yet-accessible place
• Providing copies of the documents to the healthcare proxy, doctor and medical providers, and other key people.
• Revisiting the documents/decisions periodically (every 10 years or so, or when there are changes in health or circumstance)

Types of Advance Directives

Some common types of advance directives are described below.

Durable Power of Attorney

A power of attorney (POA) document grants a person – called an agent – authority to act on your loved one’s behalf. This could allow the agent to manage bank accounts, sell property, file taxes and handle other financial matters. POAs are sometimes limited to specific matters or to a specific period of time.

A “durable” power of attorney remains in effect even if your loved one becomes mentally incapacitated.

A durable POA won’t allow the agent to make medical decisions about your loved one’s health. They’ll need a Healthcare Power of Attorney for that.

Durable Power of Attorney for Healthcare

A durable power of attorney for healthcare names the person who can make medical decisions for your loved one in the event that they become unable to do so for themselves. The person they name is called their health care proxy, representative, surrogate, or agent.

Your loved one should NOT just choose whoever happens to live closest to act as their proxy. It’s important to choose the right person for the job. The person selected should:

• understand their values and wishes.
• be willing and able to advocate for them if needed.

Living Will

A living will is a legal document that describes which types of medical treatments your loved one would – or wouldn't – want to be used to keep them alive should they become terminally ill or permanently unconscious.

Each state has its own forms and rules regarding exactly what’s covered in a living will. Generally, they address areas such as:

• Cardiopulmonary resuscitation (CPR) if the heart has stopped beating
• Use of a ventilator if unable to breathe
• Use of tube feeding (and for how long) if unable to eat or drink
• Dialysis to remove waste from the body if kidneys aren’t able to do so
• Antibiotic or antiviral medication to fight infections
• Pain management
• Comfort Care (supporting comfort as the end of life nears)
• Organ, tissue, or body donation

POLST

A POLST is a document intended for individuals who are seriously ill, very frail, or near the end of their life. It is an order that must be signed by a health care provider such as a doctor or nurse practitioner. The POLST instructs other health care providers – such as paramedics or hospital staff – to refrain from life-sustaining treatment, such as CPR.

The forms vary from state to state. In some places they are called by other names, such as POST, MOLST, or MOST. They aren’t yet fully available in every location. You can find out more at the National POLST Directory, or talk to your loved one’s doctor about whether a POLST is available in your area, and whether it would be appropriate in your loved one’s case.

Why Shouldn’t My Loved One Create an Advance Care Plan?

There are many reasons people don’t create advanced care plans – they don’t want to think about death or dying, they’re confused about the process, or they simply don’t know about it. However, there really isn’t any reason that they shouldn’t.

Like creating a will or trust, because the unforeseen can happen at any time, starting the advance care planning process as early as possible is strongly recommended.

If your loved one hasn’t yet done this, it should rank high on the list of priorities. Fortunately, there are plenty of resources to help walk you both through the process.