No one really wants to think about what would happen if they could no longer make their own medical decisions. If someone else had to decide whether to put you on a ventilator or use a feeding tube or do CPR on you, would they make that decision in the same way you would?
Tuesday is National Healthcare Decisions Day — an artificial holiday, yes, but an important one to encourage the conversations surrounding end-of-life care.
“The most important thing for patients to think about is who might be able to speak for them,” says Dr. Elizabeth Kvale, an associate professor of internal medicine, population health and oncology at Dell Medical School at the University of Texas in Austin, Texas. She is also program leader of survivorship and supportive care at Livestrong Cancer Institutes.
So many people haven’t made it clear in a formal way who that advocate will be, she says.
And it doesn’t take a lawyer to make such a decision and make your wishes known, she says. In many states it's simply an official state form that needs one or more signing witnesses.
And, Kvale says, you don’t have to wait until you are sick or older. Anyone can make these type of decisions because anyone at any time could be in a situation in which they could no longer make their medical decisions and they would need to have named the person they want to be their advocate. That might mean parents asking their young adult children what their preferences would be.
Kvale says that because she works in palliative care, “all the time I work with families who haven’t had these family conversations. It’s really a gift to families to try to think about the conversation, to know about your preference.”
It’s also important to let family members know which person you’ve designated so there is one voice and not fighting within the family about who is in charge.
You are naming the person who will be the decision-maker, but you don’t have to have all of your choices set in stone.
For example, you might think that you never want to be on a ventilator, but that decision might change if you get diagnosed with something where a ventilator is used as a temporary bridge or where a ventilator can be used while your brain is still active like in the case of someone with ALS.
“You can’t be specific for every situation either way,” she says. “It’s too variable.”
You just want someone with enough understanding of what’s important to you and what your priorities might be, she says. You also want someone who is good at making hard decisions.
Kvale says people also shouldn’t assume that their spouse would automatically be the choice. You might have someone you think is better at making these kinds of decisions.
If you think you might have more than one family member who will think they have authority, make sure everyone knows who actually does. Let them know why you chose that person and why. “Not everyone has to agree with that pathway, but they can all be supportive,” she says.
That named person who has the medical power of attorney also would need to present these documents to the hospital or medical team caring for you, or you also could file these documents with the health care system or systems where your doctors practice or where you are likely to be taken to the hospital in an emergency.
Another place to file a copy of your decision is in your refrigerator. If you become unresponsive, paramedics often look in the refrigerator for medications such as insulin. You can help them find your wishes by storing the forms in there.
Only about 10 percent of people that come into the health system have had these kinds of conversations, Kvale says, but that number is much higher in the veterans administration because there’s been a push to name a medical power of attorney.
“It’s really important to have conversations,” Kvale says. “It can change this.”