The 44-year-old doctor in Palo Alto, California, has an underlying immune deficiency, but has “never had shortness of breath before,” she said.
Her test came back negative for coronavirus. But whatever has been plaguing her, Covid-19 or some other respiratory condition, resulted in two trips to the hospital.
She’s nervous about her future during the pandemic, and she recently contacted her friends to discuss her own end-of-life decisions, she said. In the past, she’s had these kinds of discussions with patients many times.
“We don’t want to want to feel guilty for making those decisions for them. It breaks families apart,” Mac said. “It’s kind of silly for me not to have prepared with all the things I’ve seen.”
Now she feels the need to confront the questions herself, and she’s appointing her parents to make decisions on her behalf should she become unable to do so.
Mac’s conversations with those close to her parallels those of frontline health workers, patients and their families, and really, anyone who thinks the pandemic could affect them. Many more people have been forced to think about their own mortality sooner than they would have imagined.
On April 30, her 44th birthday, she called an attorney about creating an advance directive and a will. “I’m planning on moving forward with having that drafted and properly managed,” Mac said.
These life-or-death decisions are marked by a sea of of medical and legal paperwork. Here’s what you need to know in order to start putting your plan in place.
There’s a spike in people writing out their wills
“People know now they need these documents,” said Renee Fry, founder and CEO of Gentreo, a company that enables people to create and store a number of critical legal documents, including those that appoint health care proxies, delineate advance directives and spell out a last will and testament.
She said that amid the pandemic, the platform has recently seen a 223% increase in the past month in users creating paying memberships.
On top of that, users’ age distribution has “changed dramatically,” she said. Prior to the pandemic, a typical user creating a will and other documents was between 50 and 67 years old. Now new sign ups come from “across the age spectrum,” ranging from ages 28 to 72.
“People don’t fully appreciate what failure to be plan would mean for them,” said Mary Kate D’Souza, Gentreo’s chief legal officer. “It can create a legal morass that you’re just not prepared for.”
It’s a time to have meaningful conversations with loved ones
The most important thing, experts noted, is that if you’re apprehensive about end-of-life planning, you don’t have to get everything perfect on the first go. You have every opportunity to come back to these documents as often as you need or want to in order to make adjustments.
It could be at major life milestones, including your wedding, the birth of a child, a divorce or a new diagnosis. It could also be an annual check-in.
“The joy and meaning and purpose of it is to talk about it with your loved ones,” said Adam Hayden, a 38-year-old philosopher living with brain cancer. “This is an act of love.”
Hayden frequently writes and speaks around the country about the need to confront the most essential end-of-life questions.
At age 34, he was diagnosed with glioblastoma, which carries with it a 15- to 18-month median survival time. Each year since then with his wife and three kids has been a blessing. “I will happily update my documents each year,” he said.
Appointing a health care proxy
The first step is to appoint a health care proxy, someone who can make decisions or sign documents for you if you become incapacitated.
It’s imperative that you have someone you trust who can do those things for you, said Liz Salmi, who herself has been living with brain cancer for 12 years. At age 29, she appointed her boyfriend of one year (now her husband) to be her decision maker while she was being wheeled into an emergency brain surgery.
“The hardest part is the health care proxy,” Salmi said. “When you’re young, you don’t think about these things. But families can be torn apart by what happens.”
In appointing your personal proxy, you need someone whose values are aligned with your own. If you want to be taken off a respirator or a feeding tube, you need someone who can strongly advocate that position for you if you reach a point when you can’t.
Salmi’s advance directive gives concrete examples.
“CPR won’t cure brain cancer,” she said, so she rules out lifesaving measures in some circumstances. On the other hand, “If I fall into a frozen lake, I would be OK with CPR.”
Salmi has worked in the health care field, focusing on palliative care and electronic health records. Coupled with her own experience as a chronic cancer patient, she’s spent more than a decade thinking deeply about how to get these questions right.
“It’s not a medical document,” Salmi said. “It’s a quasi-legal document.” She recommended that people keep a hard copy and their own electronic copy of their documents, because they don’t automatically transfer in electronic health records.
Outside of health care settings, you’ll need a power of attorney document, which would enable a friend or loved one to make financial and legal decisions on your behalf.
Beyond managing your bank accounts and property, it’s now increasingly important to think about how someone will manage your digital footprint after you die.
“I want my LinkedIn page deleted,” Salmi said. And when the time comes, she wants her Facebook page turned into a memorial page.
Creating your advance directive
Your advance directive spells out your wishes on whether doctors should try to resuscitate you or keep you alive if you’re at the edge of death. For Covid-19, that might specifically include guidance about ventilators and assistance with breathing. More broadly, that can also address such concerns as artificial nutrition and hydration.
It’s impossible to know which health care decisions you or a proxy will be forced to make in the future, especially if you’re young and healthy. But Hayden’s and Salmi’s experiences living near the shadow of death help light the way.
The advance directive is the “shortest way to guarantee what (someone wants) will happen with their treatment,” Hayden said.
He explained that legal experts commonly prepare power of attorney documents, rather than medical experts. But based on his years of living through the complex technical aspects of a terminal diagnosis, he advised people creating advance directives now to talk about their documents with their doctors as well.
“Even if you think you’re providing the support you think you need, it may not be useful in a medical context,” Hayden said. He appointed his wife as his proxy, but his guidance is that she can make the decisions in partnership with a physician, because the intricacies of brain tumors can’t always be predicted in a standard legal contract.
Failing to create a plan not only subverts your own wishes. It can cause pain years after your death in those you love as they fight about the right thing to do. In the absence of a formulated plan, many families are at risk of fracturing on divisive questions about whether or not a family member should receive certain lifesaving treatments or whether doctors should use measures to prolong someone’s life.
Facing the decision
Back in Palo Alto, Mac is leveraging her experiences as a physician into making all these decisions for herself, should things go downhill for her.
Prior to entering into biomedical research at Stanford University, she treated patients in a Detroit hospital, where she frequently saw young people who had been in car accidents or who suffered gunshot wounds as a result of gang violence. They hadn’t always identified someone to make decisions on their behalf.
“It’s kind of silly of me to not have prepared with all the things I’ve seen,” she said. “I told my parents I need to get this handled.”
Following her flu and respiratory episodes recently in the emergency room, she’s been experiencing new neurological symptoms, including dystonia, a movement disorder. And whether or not her breathing issues were a false negative for Covid-19, she’s still worried about her body’s inability to create certain immune cells.
As she ventures further into the unknown, though, Mac can have some assurance that others with chronic diseases have had to stare down these demons and learn that the decisions can actually create peace in the midst of this present global chaos.
“Now is the time to start having these conversations,” Salmi said. “Use what’s happening in the news as a trigger.”