Imagine at this moment a medical or physical trauma happens to you, and you are unable to communicate your values, medical hopes and preferences.
You're terminal, dying ever-so-slowly — conscious but unable to speak because there's a tube down your throat connected to a ventilator. You're aware of what's going on around you, but nobody seems to comprehend that.
Three familiar voices are nearby, discussing whether to have a feeding tube put in. One suggests disconnecting the ventilator to "let the end come." Another wants to do everything humanly possible to keep you alive. The third is walking a tenuous path trying desperately to guess what you would want if you could only tell them.
Such scenarios are not as hypothetical as they might seem.
A coalition from Mayo Clinic, Olmsted Medical Center and the Assisi Heights Spirituality Center want families to talk about their end-of-life wishes this Thanksgiving.
At a "Consider the Conversation" forum last week at Assisi Heights, Rochester resident Sheri Peters, a registered nurse at Olmsted Medical Center, shared her own family's personal experience with end-of-life care.
"People need to understand how important it is to have these conversations," she said. An advance directive shares your values and end-of-life wishes with loved ones and health providers.
"It's about enabling a family so that they can make a decision, knowing what their loved one's values and decisions would be," said Dr. Cory Ingram, a palliative-care consultant at Mayo Clinic in Rochester.
"I have watched this scenario in a lot of different cases, a lot of different ways," said Peters, a nurse for 29 years.
Then the scenario struck her own family. Her mother-in-law had medical complications and neared death. Earlier, her mother-in-law's two sons and husband had died, so she had a lot of experience with death. As a result, she'd gone to a lawyer and made a living will a decade earlier.
Peters knew that, but had forgotten — until one of her friends from nursing school asked. Oxygen through a nose cannula was the only thing keeping her mother-in-law alive. The possibility of a feeding tube was discussed.
Fortunately, the mother-in-law's living will was read for Peters' husband and his siblings.
"It spelled it out perfectly … it was such a burden off my shoulders because I knew it wasn't me making this decision," Peters said. Instead, her mother-in-law, through her living will, gave her own answers. A consensus against a feeding tube happened quickly.
"She really did give us a gift in having things spelled out," Peters said. Oxygen therapy was discontinued and death came in less than an hour.
"None of us know how today is going to end," Ingram said. If you were on your deathbed tonight, what would you want? Pain control and comfort? Or awareness, regardless of pain, to see or hear your loved ones?
Essential, collaborators say, is having conversations with loved ones and your health providers from time to time so it becomes second nature for them to know exactly what you want. Start this Thanksgiving, they say.
The choice of what you want, according to the community partners, can be up to you. Get an advance directive from your health provider.
"Eighteen (years of age) and a heartbeat is what qualifies," Ingram said. "It's what you need in order to have an advance directive, so they can, in a difficult situation, know how to make difficult decisions."