Rely on advance directives, if available. There are two types of documents that make up advance directives.
First, your loved one may have formally named you as their healthcare representative or proxy in a durable power of attorney for healthcare. That means you have the legal authority to make decisions if they cannot, and the responsibility to advocate for their wishes.
Hopefully your loved one also completed a health care directive, sometimes called a living will. This document states which specific treatments your loved one does and does not want. For instance, sometimes individuals don’t want intubation or cardiopulmonary resuscitation (CPR) to be performed. Make sure those providing care have a copy of these documents, and discuss your loved one’s wishes with doctors and anyone at the bedside.
When end-of-life care is happening at home, a special medical order completed by a doctor may be needed to ensure any emergency personnel know what to do or not do. In most states, this special medical order is called a portable (or physician’s) order for life-sustaining treatment (POLST) or a medical order for life-sustaining treatment (MOLST).
Other documents, like letters or videos, about preferred medical treatments might be helpful in guiding care, although they do not have any legal or medical authority.
What to do in the absence of applicable documents. In times when a person hasn’t provided specific guidance or had the opportunity to create a document, the following approaches may help.
Revisit conversations. Did your loved one ever talk about life and death? It may have been after watching a movie or reading a book about dying. Perhaps they shared an opinion about a celebrity or neighbor’s end-of-life situation after reading or hearing about it. These conversations can help create a better understanding of what medical choices your loved one would likely make.
Think about what they love doing. It may seem odd to take time at the end of someone’s life to consider what your loved one likes to do, but it is very important. End-of-life care is as much about how a person wants to live as how they prefer to die. For instance, maybe they love talking with family. Is there a medical option that would keep them alert enough to talk with family? By considering what they enjoy day to day, you’ll be centering your decisions on them.
Don’t forget to talk with others about what your loved one values for additional insight or information.
Include cultural considerations. Different religions, cultures, and ethnic groups have different beliefs and needs at end of life. Get to know if your loved one’s culture would have any limitations, requirements, or expectations, like which treatments are acceptable or who can make decisions.
Some ways to share these considerations with anyone caring for your loved one are to complete these statements:
Make sure the healthcare care team knows about these religious, cultural, or ethnic concerns so any medical options reflect their importance.
Ask questions. Healthcare professionals are the experts in medical care. But you are the expert on your loved one’s life. Don’t be afraid to ask specific questions about expectations or outcomes.
Some questions might be:
Anytime information doesn’t make sense or there is a term you don’t know, ask that it be explained again. It’s also helpful to have a trusted friend or family member take notes during conversations to help remember details and answers.
Substitute judgment, select best interest, or both. One way to make decisions is to use substitute judgment. Substitute judgement is making the decision as your loved one would. For example, if a loved one expressed a goal of dying at home, the choice would be to die at home if at all possible. Substitute judgement is typically the preferred approach because it gets closest to honoring the patient’s autonomy or right to make decisions regarding care regardless of clinician recommendations.
Another way to make decisions is to choose what would be in your loved one’s best interest. You select treatment after considering the pros and cons overall using your own values. For example, someone might select CPR for a loved one even though it might cause injury, because it could keep that person alive.
Often, both approaches overlap.
The best way to make end-of-life choices for others begins now by talking openly and frequently about values, wishes, and preferences. Ensure you and your loved ones have the legal documents in place and easily available. Starting this conversation now will help if you ever find yourself in the overwhelming position of making medical decisions for those you care about.