Three months after Mike and Luciana Wiltse were married, Mike was on a ventilator with COVID-19. Mike’s illness impressed upon the couple the importance of advance planning for healthcare and end-of-life decisions. Photo by Shannon Green, State Bar of Wisconsin.
A few months before getting married in May 2021, State Bar of Wisconsin public relations specialist Mike Wiltse was working on a project with lawyer Ben Adams. Adams often appears on local media outlets to promote National Healthcare Decisions Day (NHDD), which takes place annually on April 16.1
When Wiltse told Adams he was getting married, Adams suggested that Wiltse and his fiancée, Luciana, discuss end-of-life decisions. It made total sense to Wiltse. But in the press of events leading up to the wedding, that discussion never happened.
“Luciana was really busy planning the wedding, so we kept saying, ‘We’re gonna do it, we’re gonna do it,’” Wiltse said. “We got married, we go on our honeymoon … before you know it it’s July, every weekend is tied up. Then August rolls around and that’s when I’m hit with COVID.”
‘It Is Agonizing’
The Wiltses aren’t alone in putting off discussions about end-of-life decisions. It’s a common problem, one that NHDD was created in 2008 to address.
The annual observance of NHDD highlights the importance of advance planning and encourages people to express how they’d like important healthcare decisions to be made should they become incapacitated.
NHDD is the brainchild of Nathan Kottkamp, a healthcare lawyer in Virginia. Kottkamp founded NHDD to provide the public and healthcare providers with information on healthcare decision-making and to make tools for healthcare planning widely available.
Kottkamp’s goal in creating NHDD was to take the mystery out of making healthcare decisions and impress upon people the importance of choosing an agent for healthcare decisions.
“Time and time again, families, providers, and hospital administrators struggle to interpret the wishes of patients who never made their healthcare wishes known (or failed to complete an advance directive to record their stated wishes),” according to the NHDD website.2
“These families and professionals do their best to advocate for what they believe their loved ones or the patient would want … but they are inherently doing so without any guidance, and it is agonizing.”
Governor Evers has proclaimed April 16 to be Healthcare Decisions Day in Wisconsin.
‘I Can’t Breathe’
The Wiltses barely avoided the type of agonizing situation that Kottkamp warns about.
Mike’s diagnosis came shortly after Luciana’s parents, who were visiting, also came down with the virus. At first, the newlyweds were more concerned about Luciana’s parents.
“And then Mike started getting sick a week later, and then he just woke up and said ‘I can’t breathe,’” Luciana said.
The couple rushed to urgent care. A physician took one look at x-rays of Mike’s lungs and sent him to an emergency room.
One day after he was admitted, Mike – who was fully vaccinated – was transferred to the hospital’s intensive care unit. He spent 27 days in the hospital.
Within a few days after Mike’s admission, the Wiltses were being forced to make important healthcare decisions without a healthcare power of attorney and while Mike’s body was under assault from the virus and Luciana was prohibited from entering the hospital because of COVID-19 protocols.
“We did lots of stuff about finances before getting married, but not really health care,” Luciana said. “And the thing is, it was so quick.”
Early Decision on Ventilator
Four days after Mike was admitted to the hospital, the Wiltses had to decide whether to put him on a ventilator.
The decision was made with a priest in the room with Mike and his physician while Luciana attended via videoconferencing. Fortunately, Mike was lucid enough to sign the informed consent form.
“I remember a nurse being outside my room, witnessing it through a window,” Mike said.
The quick decision to go on the ventilator probably saved Mike’s life, Luciana said. Because he went on the ventilator when his lung capacity was still at 95% (on oxygen), his lung cells retained the capacity to fight off the virus and heal while the ventilator breathed for him.
Had they waited until Mike’s oxygen capacity dropped lower, his lung cells, battered by the strain of trying to breathe while battling the virus, probably wouldn’t have recovered.
‘Knowing What You Want’
Luciana said it was only luck that spared her from having to make a decision about the ventilator without her husband’s input.
“I think what’s important is knowing what you want. Have your primary care physician involved so you truly know these decisions, because maybe another person afraid of a ventilator would have said ‘No’ and you suffocate yourself to death.”
As the end of Mike’s second week on the ventilator neared, his physician said a tracheotomy might be necessary. With no advance directive in place and Mike’s physical state deteriorating, Luciana faced the prospect of deciding on the procedure without knowing her husband’s wishes.
“I’m not sure I would want a tracheotomy to survive,” Mike said. “I needed to think about that and at that time there was no way I could. She would have had to make the decision for me and I would have had to live with it.”
A tracheotomy wasn’t necessary. Mike began a slow recovery, and the ventilator was removed after 13 days.
Making healthcare decisions and committing them to writing is, ultimately, an act of love.
‘The Party is Not Important’
Her husband’s battle with COVID-19 has persuaded Luciana of the importance of committing end-of-life and other important healthcare decisions to writing and updating them often. Things are constantly changing, she said.
“People change their minds. And of course medicine can get better too. Even the doctor said, ‘If this was last year, Mike would have passed away because treatments were trial and error … We didn’t have protocols yet.’”
Planning for end-of-life decisions is a lot less fun than planning for a wedding reception. But Luciana wishes she’d found time during the three months she was working on the wedding to discuss healthcare decisions with Mike.
“People always think about the wedding and the party instead of the important things, because the party is not important, however we make that more important.”
The Wiltses not only were newlyweds when COVID-19 struck Mike – they also were still new to each other, having dated for only 18 months before they were married. A couple with a longer history might have been better able to handle the healthcare decisions forced on the Wiltses by the coronavirus.
Without such a history, Luciana said, she would have been making end-of-life decisions for her husband in the dark.
“We just had gotten married. I don’t know if I would have thought to keep him alive. I think as you grow in marriage you can also know these choices better, from each other. But that’s why you need to update these things.”
‘He Had to Get Better First’
Some aspects of modern life make it harder to find time to discuss and execute advance directives and other healthcare-decision tools. These include the rise in the number of households with two working parents and extended families spread across or between continents.
The Wiltses are a prime example. The couple lives in Brookfield with Luciana’s nine-year-old daughter but Luciana, an orthodontist, splits her time between practices in Madison and Elm Grove.. “A busy life makes us not decide on these things,” Luciana said.
“And Luciana’s parents live in Brazil and they’re older, so there’s that to consider as well,” Mike said.
Then there’s the unwillingness to contemplate or discuss end-of-life issues.
“I think people think they’re never going to need it,” Luciana said.
But it’s important to push through that unwillingness, Luciana said, because once a serious illness strikes there’s often no time or headspace for setting up an advance directive.
“I didn’t even know if Mike was going to live from day to day, so why update something when somebody cannot even be with me there? I didn’t even know what was going to happen. He had to get better first.”
An Act of Love
Since his illness, Mike said, he has learned that the healthcare-decisions toolbox includes more than advance directives and other healthcare documents. It also includes a digital-assets inventory, which lists the usernames and passwords for a person’s email, social media, and online shopping accounts.
Luciana said she has learned that it’s important to communicate healthcare decisions to the people who would play a role in carrying them out.
“I think it’s important to share with your primary care [doctor] and with your attorney, because if there’s something you don’t want, then they will be able to intercept.”
If the couple’s experience has taught them anything, it’s that the need to make end-of-life and other healthcare decisions is universal, regardless of age, health, or socioeconomic status.
“It can affect anybody – we’ve learned that,” Mike said. “People who are younger died from COVID, people who are younger die from car crashes.”
Making healthcare decisions and committing them to writing is, ultimately, an act of love, Luciana said.
“Everybody’s life is so different, and they have to think about these things when the worst happens, how it’s going to be dealt with, so other people around you are not scrambling to figure out what you would like and how it should be done.”
Also of Interest
End of Life Planning Guide, Free Downloads, April 6 – April 22
To mark National Healthcare Decisions Day, which takes place annually on April 16, the State Bar of Wisconsin is offering free downloads of
A Gift to Your Family: Planning Ahead for Future Health Needs in Wisconsin, from April 6 through April 22, 2022.
Who will make your medical decisions when you can’t?
Talking about your preferences for treatment will save your family the heartache of having to make decisions for you without knowing your wishes.
A Gift to Your Family: Planning Ahead for Future Health Needs in Wisconsin helps you get started with the information and forms needed to make your wishes known.
A Gift to Your Family has been expertly reviewed, refreshed, and re-published as an 8th edition. You’ll find information on advance directives, healthcare agents, and organ and tissue donations. You’ll also find documents and instructions for creating a Power of Attorney for Health Care and a Declaration to Physicians (living will), a resources list, and removable wallet cards.
To download your free copy of
A Gift to Your Family, from April 6 – April 22, visit wisbar.org/lifeplanning2022.
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Endnotes
1 The Conversation Project,
The Origins of National Healthcare Decisions, Inst. for Healthcare Improvement,
https://theconversationproject.org/nhdd/origins/ (last visited March 2, 2022).
2Id.
» Cite this article:
95 Wis. Law. 49-51 (April 2022).
