I’m inundated with national news stories about end-of-life care gone wrong. Terminally ill people who wanted to die peacefully at home, but the end comes in a hospital bed, surrounded by tubes and machines. Estranged relatives who disagree with the rest of the family’s wishes. Parents unable to accept a devastating prognosis after a horrible accident.
When I started looking into these healthcare decisions more, what seemed like a simple desire — I don’t want to be kept alive by machines if there’s no realistic chance of recovery — started to seem complicated and overwhelming.
National Healthcare Decisions Day is coming up on April 16. This seemed like the perfect time to take up this issue with an expert. Patient and family education coordinator Cindy Westley, RN, came to the rescue, answering my many questions.
What I learned? That whether you haven’t thought about it yet or you’ve thought about it way too much, you should fill out an advance directive and name someone to make decisions for you. And while it’s tough to plan for every scenario, putting thoughts down on paper and talking with your loved ones can make a huge difference should the unexpected happen.
The Language of Healthcare Decisions
Advance directives, living will, durable do not resuscitate (DNR) — what do all these terms mean?
An advance directive is a legal document that explains your decisions about future medical care.
The advance directive doesn’t have to be a formal document that you get from a lawyer or a hospital. You can write it on notebook paper or even a napkin. But to ensure it’s legal and easy to access, you must:
- Sign and date the document
- Have two adult witnesses
- Give your healthcare provider a copy
In your advance directive, you can name a healthcare agent, an individual who makes decisions on your behalf if you can’t. In some states, this person is referred to as having a medical power of attorney.
Fill Out an Advance Directive
An advance directive used to sometimes be referred to as a living will, but we’ve gotten away from this language in Virginia, Westley says.
A durable DNR is a doctor’s order for people who are seriously ill and do not want healthcare providers to attempt resuscitation if they have no heartbeat or pulse. The patient, or in some cases the patient’s healthcare agent, and doctors sign this.
Medical Interventions: The Specifics
If you become terminally ill, your healthcare team may try to save or prolong your life with:
- Cardiopulmonary resuscitation (CPR)
- A ventilator or respirator (machines that breathe for you)
- Kidney dialysis
- A feeding tube
- IV fluids
In your advance directive, you can specify if you want these treatments, under what circumstances you want them and for how long.
Healthcare Planning: What You Should Do
If you have a sudden illness or an accident, emergency responders will attempt to resuscitate you, keep you alive and take you to the hospital. At the hospital, staff will try to figure out who your healthcare provider is so they can obtain your medical records, including any advance directives you have in your record.
In Virginia, if you don’t have an advance directive, the law determines the order of relatives who can make decisions for you:
- A court-appointed guardian, if you have one
- Your spouse if divorce is not filed
- All adult children
- Your parents
- Your brothers and sisters
If you have none of these, the decision-making may fall to a judge. Virginia law does not recognize common-law marriage, so if you haven’t named a healthcare agent and you aren’t married to your partner, your partner may have no say in your healthcare decisions.
“If you can’t make decisions for yourself, who would make them?” Westley says. “Everyone should think about this.”
Westley encourages everyone to:
- Talk with your family about your wishes
- Have an advance directive that names at least one healthcare agent
- Give copies of your advance directive to your doctor, your family and any health systems where you get care
“It is sad when people complete an advance directive and don’t share them with anybody, so their wishes are unknown,” Westley says.
Westley recommends carrying a wallet card with your healthcare agent’s name and contact information and where to find your longer advance directive. You can get a card to print and fill out on UVA’s short advance directive form.