Advance Care Planning, Simplified

Nobody likes to think about getting seriously sick or injured, but planning for the worst can be a significant gift to yourself and your family. Advance directives are legal documents that let others know your preferences for care when you are incapacitated, whether you are expected to recover or you’re near the end of life.

“It’s important to think about advance directives and discuss your wishes with your loved ones,” says UNC Health primary care provider Thaddeus West, MD.

Talking with your provider is often a good place to start, Dr. West says. Advance directive documents typically include a living will (scope of care you desire) and a durable healthcare power of attorney (designating someone to make medical decisions for you).

“It allows people to express their wishes for medical care and do it when they’re not in distress,” he says. “I ask people, ‘What do you want if you become ill? Do you want full intervention including machines to keep you alive, or do you want more limited medical intervention?’ It allows people to maintain their dignity and make sure their desires and wishes are met not only when they’re healthy, but also when they’re sick.”

All Adults Should Have an Advance Directive

You don’t have to be older or have a terminal illness to have advance directives. In fact, every adult should, Dr. West says.

“The time to start thinking about it is when you’re 18 years old,” he says. “Your parents are no longer able to make medical decisions for you unless designated as your healthcare power of attorney.”

If you’re young and healthy, you could still be in an accident and suffer an injury that requires someone else to make decisions on your behalf. Giving someone the authority to speak for you can be temporary, says UNC Health internist and palliative care specialist Katherine Aragon, MD. She treats people who have been injured in accidents as well as those who need long-term care for serious illnesses.

“We would recommend anyone who’s 18 or older complete at least a healthcare power of attorney,” she says. “We can never be prepared for everything that might come our way. But if we do end up in a health situation where we can’t speak for ourselves, it helps the people who care about us know they are carrying out our wishes. It helps relieve the stress (on loved ones) that might come from feeling like they don’t know what we would want.”

It’s a good idea to update your documents whenever you have significant changes in your life, such as getting married or divorced, moving, having children or having a change in your health.

What Is a Living Will?

A living will is not the same as a will that lets others know how you want your property and financial assets divided upon your death.

A living will allows you to say which medical treatments or care you would want and which ones you would not want if a time comes when you cannot make decisions or express yourself. These medical interventions might include:

  • CPR: Would you want CPR to be administered if your heart stops or is beating abnormally? CPR involves pushing on your chest forcefully enough to push blood through your heart, but it can sometimes break ribs. Medicines and electric shocks, called defibrillation, also may be used. CPR is extremely effective for young, otherwise healthy people. It’s less likely to get your heart going again, though, if you are elderly or have an advanced medical condition.
  • Ventilation/intubation: If you are unable to breathe adequately, would you want to be placed on a ventilator? This is a machine that pushes air into your lungs through a tube placed down your throat.
  • Artificial feeding and fluids: If you are not able to eat or drink, would you want a feeding tube to your stomach through your mouth or nose? Would you want an IV providing nourishment and fluids?

What Is a Durable Power of Attorney for Healthcare?

You may want to choose someone to be your power of attorney for healthcare, or proxy. That person will be legally allowed to make medical decisions for you if you are unable to make them yourself. These could be life-or-death decisions.

“I tell patients to designate the person or persons they feel would be best able to convey their wishes and follow their desires stated in advance directives,” Dr. West says.

Your power of attorney for healthcare doesn’t have to be your spouse or relative. This person could be a close friend, a lawyer or someone else you know. Sometimes, decisions that will lead to the end of someone’s life are too difficult for our closest loved ones to make.

“Make sure you have discussed this with your designee,” Dr. West says. “You want to make sure they know your wishes and they are willing to make decisions if you are unable.”

The conversation with loved ones, especially the person you designate to carry out your wishes, may be more important than the documents themselves, Dr. Aragon says.

“Sometimes people think about what they want, and even put things in writing, but don’t talk to their loved ones,” she says. “We don’t want to upset people or cause sadness, but that conversation is vital.”

You should also let others in your family or circle of friends know what your decisions are, including who has your power of attorney. This can prevent disagreements and stress at very vulnerable and emotional times for families.

“I’ve seen family members come to the hospital and want to make changes at the last minute,” Dr. West says. “That’s when it’s really valuable to know the wishes of the patient.”

Choosing a Living Will or Durable Power of Attorney

Living wills and durable power of attorney documents work best together. You don’t have to have both documents, but each supports the other. If your power of attorney has to make decisions, they have your wishes in writing. And if there is any question about instructions in the living will, your power of attorney has the final say, so there is no confusion or power struggle.

Other Types of Medical Forms

If you have a serious illness or are nearing the end of your life, you can fill out forms that indicate what you want if you have a medical emergency.

“These medical orders are meant to indicate what a person wants now for their care, rather than in the future,” Dr. Aragon says.

North Carolina has a MOST form: medical order for scope of treatment. It is for people with advanced illness and informs their providers about specific treatments they do or do not want to receive, such as CPR, intubation, a feeding tube and comfort measures. You and your doctor must sign the form.

The form includes an option to decline CPR, known as a “do not resuscitate” or DNR, which you can specify on other medical documents as well. A DNR order should be noted in your medical chart and placed in a visible spot in your home to inform emergency medical responders.

Make sure your healthcare power of attorney and loved ones know which forms you have completed and how to access them.

How to Start Advance Care Planning

If you haven’t spoken to your provider about advance care planning, it’s a good idea to start there. Ask them about your health outlook, especially if you have been diagnosed with a progressive disease, such as dementia.

“I encourage people to talk with their doctor about what they should expect from their health as time goes on,” Dr. Aragon says. “It might help them know what to say to their family if they know what to expect. It doesn’t take away the grief and sadness about life changes that are coming, but being prepared can relieve a lot of stress.”

Every state has its own laws and regulations regarding advance care planning, so start with your state attorney general’s office or local area agency on aging to find the right forms. You can find the number through the Eldercare Locator or by calling (800) 677-1116. You can also get information from the AARP, the American Bar Association, the National Hospice and Palliative Care Organization or, if you are a military veteran, from your local Veterans Affairs office.

Advance Care Planning With or Without a Lawyer

Most forms can be filled out without legal assistance or advice though some people feel more comfortable involving their lawyer.

Depending on state rules, some forms need to be notarized by an official given authority by the state to witness the signing of documents. Notary public officials often can be found at banks, post offices, parcel mailing stores, attorney’s offices, car dealerships and many other places.

Forms may help guide your thinking and ensure you have covered everything, Dr. West says, but don’t forget to talk to your provider and loved ones about your wishes. Put your wishes in writing, sign the document and let someone know the location of your advance directives.

“It may be hard to talk about,” he says. “However, you can save your family a lot of stress if they don’t have to guess about your wishes, or worse yet, disagree about scope of care.”

Do you have questions about your long-term health or planning for your future needs? Talk to your doctor or find one near you.