Knowing what someone wants at the end of life doesn't just help those who may have to speak on that person's behalf, either. The National Cancer Institute said people who have already discussed their wishes for end-of-life care with their loved ones feel less stress at the end of their life.
Acknowledging what's happening to someone also provides a chance to take a deliberate detour from seeking a cure that may be very unlikely to providing comfort care and focusing on other things, from relationships to bucket list items.
A hunger for knowledge
There are many ways to measure a campaign's success, especially when the goal is "more humane death," Goodman said. "That's beyond my pay grade. But we can measure the interest."
Since late August, the website theconversationproject.org has had 60,000 unique visitors, and 40 percent of them have downloaded the group's starter kit.
"That amazes me. I don't download anything," Goodman said. "We've had so much response we're kind of drinking out of the fire hose, thinking about our next stage and how to get our message passed along to others."
The project website links to end-of-life documents like an advanced directive, but the kit itself is an assessment tool for an individual to think not only about what matters most, but how to start conversations about it. First, an individual thinks about what she needs to convey. Then comes the how-to, including an assessment of who someone might choose to tell their wishes. Finally, there are actual conversation starters: "I need to think about the future. Will you help me?"
The group has launched a number of small projects with companies that want to use their wellness programs to encourage employees to have that important conversation, and it's also teamed with faith-based groups. "Clergy don't have a problem with the D-word," said Goodman. So next up is a train-the-trainer kit, what she called a "conversation in a box. We'll be able to help people who want to bring it to their own community or congregation."
Say it, write it
Requirements vary from state to state, so it's important to get a form that works where you live. But in general, an advance directive is a document or witnessed oral statement that names a surrogate to make health care decisions for an adult who cannot do it or outlines desired care under particular circumstances, or both. Another form, the Physician Order for Life-Sustaining Treatment, is completed with a physician or care team. It's a standing medical order for what should or should not be done, and a physician who bases care on the POLST is protected from liability.
Advance planning is not just for terminal situations. Sometimes, a person will survive the condition that for a time, at least, left them unable to discuss and express wishes. That means living with whatever was done.
The National Healthcare Decisions Day blog has compiled some resources to make it easy to get many of the advanced planning forms. Just remember that many of them are state-specific.
Download a PDF of the instructions for completing the form.
Download a printable version of the Utah Advance Health Care Directive form, which can be completed by hand.
Cownload an electronic version of the Utah Advance Health Care Directive form, which can be completed online, printed and initialled by hand where necessary.
Visit the American Bar Association website to access a tool kit for health care advance planning.
EMAIL: firstname.lastname@example.org, Twitter: Loisco
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