Advance care planning (ACP) is planning for your medical future, something that is particularly relevant when you cannot speak for yourself. Advance care planning isn’t about what happens after death. This is all about what happens while you are still alive if you were to become critically ill, and often at the very end of life – for example, if you were in a coma or intubated on a ventilator.
When considering ACP, there are a few main components to address.
Ask Yourself, Who?
Who do you want to speak for you if you cannot speak for yourself? Who would speak for you if that person is not available? I recommend designating primary and secondary persons to make decisions on your behalf. If you have not made this designation, your team of providers will follow the instructions of your next of kin. The pattern of who exactly is considered next of kin varies somewhat, based on state laws. Who you choose to designate may match the person(s) who is actually your next of kin, but that is not a requirement.
Ideally, you want to feel that whoever you choose would do what you would want for you. This may be different than what they would want for you, and different from what they would want for themselves.
Perhaps you have already chosen your primary and secondary decision makers. If so, great job! Now, do your primary and secondary decision makers know how you want them to speak for you regarding medical care? If not, tell them. Sit down and have a conversation. Do these people know your wishes, preferences, and values? If not, tell them.
Ask Yourself, What?
Do you know your own wishes, preferences, and values for medical care? It is nearly impossible to outline every possible health scenario. It is, however, possible to pinpoint what matters to you. Don’t feel like you must make decisions about every specific scenario. Also recognize that your desires may change over time. Your preferences if you are not able to make decisions for yourself may differ at thirty-five, sixty-five, and ninety-five. Just consider what you would want for this stage of your life and make appropriate decisions.
Unsure where to start? Here are some questions to consider:
• Do you have strong feelings about wanting to avoid certain medical procedures (such as blood transfusions, chest compressions, intubation, feeding tubes)?
• Do you want a do-not-resuscitate (DNR) order?
• Would you want resuscitation to be attempted if your physicians \felt death was imminent?
• Would you want resuscitation to be attempted if you are not lucid or cognizant of your surroundings without likelihood of improvement?
• What does a meaningful life mean to you?
As you explore and determine your preferences for medical care, share them with your decision makers. If your preferences change, talk with your decision makers to keep them in the loop. It can be hard to talk about topics related to being sick or dying. Nevertheless, these are important conversations, especially in the middle of a pandemic. Do not assume that there is a standard decision when it comes to ACP. People sometimes choose very different preferences for their care. Sharing your thoughts and desires with your loved ones will make them feel more confident and peaceful if they ever have to speak for you.
Document Your Decisions
You have designated your primary and secondary decision makers; your decision makers know who they are, and they have an idea of your health care preferences. Now what? Document it.
It is helpful to formally document, at a minimum, who your decision makers are and preferably some idea of your wishes. There are many ways to accomplish this. You can work with a lawyer and create a document that includes these details. You can also complete a pre-existing form.
In Virginia, you may consider using the Virginia advance directive. You can download this form online (massey.vcu.edu). The medical advance directive has blank spaces to write in the names of your decision makers. It then asks about your preference in two medical scenarios.
Once you’ve completed either the Virginia advance directive (yourself) or worked with a lawyer for a customized document, you should share the document with your family members and provide signed copies to your physicians for placement in your medical record.
Some people desire a DNR. This is a medical order, signed by a medical provider. This means that if the person stops breathing or his or her heart stops beating, resuscitation will not be attempted. The person will still receive care and be made comfortable. In some situations, the DNR order is posted on the refrigerator door or above the bed so the emergency medical services know the patient’s wishes.
Although it sounds clinical and unemotional, ACP is personal and important. Please take the time to have these conversations about yourself and your loved ones and establish the proper documentation.
Medical Terms to Know
It is helpful to be aware of the medical terminology surrounding critical care illness.
CPR (cardiopulmonary resuscitation) Includes chest compressions, breathing assistance including a breathing tube sometimes, medications and fluids to help your heart, and the use of a defibrillator. CPR is started if someone’s heart stops beating or stops breathing.
Chest compression A technique used during cardiopulmonary resuscitation or for the treatment of choking.
Intubation Placement of a plastic tube through the mouth into the main airway. Oxygen and sometimes medications are delivered through the tube.
Ventilator A machine that helps you take breaths if you can’t do it on your own. Your doctor might call it a “mechanical ventilator.” People also refer to it as a “breathing machine.”
Cardiac arrest The heart stops beating.
Respiratory arrest Cessation of breathing.
There is a lot to consider when developing a strategy for ACP. Talk to your doctor if you have questions.