If you’ve talked with your family about end-of-life wishes – that’s the first step. You’ll also need paperwork to make your wishes clear.
There are different names for the documents you’ll need — living wills, advance directives, Five Wishes. They all serve the same purpose; they spell out what kind of medical treatment you’ll want if you become seriously ill, and how aggressive you want the treatment to be.
To help people navigate the paperwork, Amy Leonard, a social worker, teaches a monthly class at The Everett Clinic.
The class is not just about how to fill out these forms. A doctor or nurse also talks about lifesaving treatments so people can better understand what those measures entail.
At this recent class, John Macklin, a retired professor, wanted to know more about CPR’s success rate. “Among the people who have been successfully revived with CPR, 5 to 10 percent, is there a statistic about the number that have gone on and have had healthy lives?” he asks.
Leonard says she hasn’t seen the numbers.
“I know that often if CPR is done on that healthy athlete that goes down at the gym, they often go on to do better and survive and do OK,” she says. “The older, the frailer, the sicker you get, the less likelihood that you’ll bounce back.”
Leonard says understanding these procedures help people make informed decisions. Some procedures have long-term consequences.
She says from a healthcare system standpoint, it’s costly. From a patient perspective, the hospital isn’t where most people want to die.
“If people understand a little bit better, then they might make different choices and might avoid things like hospitalizations repeatedly in their last six months of life,” she says.
Leonard says the two most important papers are an advance directive and a durable power of attorney for medical decisions when you’re not able to make them. You’ll need both documents.
And there’s a third document that’s extremely important for elderly people, especially those with multiple chronic conditions, or those who are closer to end of life – the Physician Orders For Life Sustaining Treatment, or POLST form.
Leonard pulls out a neon green form; it’s bright so medics can find it easily when responding to an emergency.
“If you know if you don’t want to be resuscitated, this is the document that allows medics to follow your wishes. Otherwise in Washington, the default is you have to be resuscitated.”
A POLST form also covers your preferences for medical interventions, and things like artificial feeding. Your doctor, nurse practitioner or physician assistant must sign this form.
Leonard says many people put their POLST forms on the fridge so medics can spot them right away. The idea is to place it where it’s visible and accessible. Some people even put it on the inside of the front door.
The class chuckles. But Leonard says it’s a great conversation starter, and “you’d be doing a great community service to all your friends and family.”
Once all the forms are filled out, Leonard says it’s a good idea to make copies of all these papers for the people who’ll need them — your doctor, the hospital you’ll likely go to in your community, and your family.
Even the family members you haven’t chosen to make decisions for you, Leonard says, “so they understand and aren’t surprised at any kinds of decisions you’ve made, and so they can support the person you’ve picked as the decision maker.”
Having multiple copies also increases the chances your wishes will be honored. Washington doesn’t have a registry for end-of-life paperwork, unlike some states. The state Department of Health used to keep these records but stopped because of budget cuts.
Oregon has a registry and is also developing an online system that allows patients to fill out the forms and doctors and health-care providers to access them.
Leonard says these aren’t only for the elderly. She recommends that people start having conversations and drawing up papers when they start having children. This is driven by her experience working in hospice, with people at the end stage of life.
“It’s so important to do what you can to make it easier on your family in terms of giving them the information they need,” she says.
Besides, Leonard says you can always revisit these wishes. It’s not uncommon for people to change their minds, depending on where they are in their lives.