Healthcare Advocates are Encouraging ‘The Conversation’ in April.
– By Gregory Rumburg –
Who will speak for you in case you can’t speak for yourself?
That’s the question healthcare professionals are putting before themselves, their families and communities this month—and in the months to come, too. April 16—the day after federal taxes are due—has been designated as National Healthcare Decisions Day. Now in its fifth year, NHDD is designed to encourage adults to make key medical decisions before a serious illness or accident occurs, and it encourages individuals to have “the conversation” with family members letting them know about these decisions.
To that end, The Conversation Project is slated to launch this month, too. The grassroots campaign to encourage adult family members to make their medical wishes known to one another is backed by Dr. Ira Byock, an expert on end-of-life care and the author of numerous books, and by Pulitzer Prize-winning writer and former columnist for The Boston Globe Ellen Goodman. Caring for her mother at the end of life, Goodman experienced firsthand the challenges of caregiving and decision making.
In January, the two were among a panel of experts who participated in an online forum with healthcare providers sponsored by the Institute for Healthcare Improvement. During the event, Byock summarized the importance of “the conversation.”
“If [a health-related] tragedy strikes our family, how can we keep the tragedy in the family?” as opposed to getting medical ethics committees, judges and lawyers involved, he said. A key to providing clarity and legal standing comes from an advance directive, which guides a family toward what an individual would tell them if they were able during a medical crisis.
Advance directives are an indispensable tool for healthcare professionals like Trish Ezell, a registered nurse for Odyssey Hospice. “Families and healthcare providers want to honor someone’s wishes,” she says. “The best way of doing that is to get those wishes on paper before something happens.”
Finding the Right Tool The federal Patient Self-determination Act of 1991 requires that individuals are informed of their right to participate in healthcare decisions. An advance directive, then, is a legal document protecting an individual’s right to refuse or request medical treatment in the event he or she loses the ability to make decisions on their own.
“I think everyone should have one,” says Dennis Marx, a medical social worker with Odyssey. “It expresses one’s wishes about whether you want to have CPR, if you want to be supported by artificial means, if you want intravenous treatments, or what comfort measures should be pursued when aggressive, curative treatments aren’t working, for example.
” By completing an advance directive, two key tasks are accomplished: proxy, or the appointment of a healthcare agent; and instruction, the provision of guidelines (one’s wishes or plan) for care. The proxy names an individual to make medical care-related decisions on behalf of the one receiving care. The guidelines allow the healthcare agent to carry out the individual’s wishes.
An advance directive only becomes effective when an individual’s doctor determines he or she is no longer able to make or communicate healthcare wishes. Individuals 18 years or older may have an advance directive. Because it’s a legal document, each must be completed in accordance with state mandates. Advance directives may be changed or revoked anytime.
Once an advance directive is completed, individuals should communicate their wishes by distributing copies to key cohorts, including one’s doctor, healthcare agent, lawyer, spouse or partner, family members and clergy. The original should be kept in a safe—but accessible—place.
Officials behind National Healthcare Decisions Day hope advance directives will be completed on April 16, but they hope, too, families will remain open to frank conversation about healthcare wishes year round.
That’s where The Conversation Project comes in. Advocates assert this effort is about more than having legal documents in order. It’s about acknowledging that when tragedy strikes, it’s primarily a human event that’s occurring, not simply a medical or legal event. Goodman imagines “having the conversation,” where families come together, perhaps around the family kitchen table, to share their wishes. Having the conversation expresses love and can facilitate caring support.
“You might say, ‘Mom, Dad, I need your help. If I get into a situation where I need to help you, I need to know what you want. Help me out, please,’” Goodman suggests.
Supporters of The Conversation Project say it’s key that caregivers start with themselves, completing their own advance directive and sharing it with loved ones prior to prompting their family to do the same. They say there’s clout in being able to say, “I’ve done mine. Will you join me in completing yours?” Get Prepared Many web sites provide guidance toward completing advance directives, including one by the sponsors of National Healthcare Decisions Day (www.nhdd.org).
Personal physicians and lawyers may also be able to help. “An advance directive is a gift to the family,” Ezell says. “That way the burden of decision making is taken away. This applies to all of us—we never know what may happen.” To learn more, please call Odyssey Hospice at 913-541-0266 in Kansas or 816-795-1333 in Missouri.