At nine months pregnant, Caitlin Albright prepared a bag to take to the hospital, and filled it with essentials: toiletries, nursing pajamas, a floral onesie for her future baby. And, last but potentially most important, a three-page living will.
This legal document, also known as an advance directive, makes sure Albright’s wishes about possible heroic medical intervention are plainly stated. If the coronavirus left her sick beyond hope of recovery, she said, she wouldn’t want to be kept alive on a ventilator or fed through tubes.
Albright is terrified about giving birth in a hospital where people are sick with the coronavirus. She sees news stories daily about how otherwise healthy people died due to the virus — and died alone. Their partners, parents, and siblings blocked from their bedsides. Those stories are driving hard conversations about end-of-life decisions that healthy people generally rarely consider.
“It is something I think about and I have anxiety about every day,” said Albright, 34, of Chester Springs, who also has a 15-month-old son.
Healthy people previously had faced no urgent need for a living will, said Scott D. Halpern, the director of the Palliative and Advanced Illness Research Center at the University of Pennsylvania.
“My tune on them has changed,” Halpern said. “With the limitation of patient and family presence that the crisis requires, having a written document might be much more useful now than ever.”
As the coronavirus pandemic escalated in the region, Philadelphia-area trusts and estates lawyers said, business picked up. These lawyers help with estate planning, meaning setting up a will, which outlines a person’s wishes upon death, and living wills, which specify end-of-life medical care. Clients who began the process months ago and dallied with their paperwork suddenly wanted it finished as soon as possible. New clients wondered how quickly they could get documents signed.
Knowing that visitors are not allowed in hospitals during the pandemic has put an extra emphasis around living wills, said trusts and estates lawyer Douglas L. Kaune, of Unruh Turner Burke & Frees in Phoenixville.
The spread of the coronavirus has made people think: What if it happens to me? And soon?
“It’s more of a recognition of mortality that’s different,” Kaune said.
When drafting a living will, people are asked to consider whether they want invasive treatments such as CPR, ventilator use, dialysis, chemotherapy, or water or food through a feeding tube, said Jocelin A. Price, a lawyer in Semanoff Ormsby Greenberg & Torchia’s trusts and estates department. If there is severe and irreversible brain damage, with no hope of a full recovery, would they want to be kept alive?
Although Halpern agrees that people should be discussing end-of-life preferences, he advocates considering questions about quality of life, rather than specific medical interventions. Penn Medicine has an online resource to guide patients through this process and upload their wishes to medical files.
The questions posed from Penn outline such scenarios as: “I am confused all the time.” “I rely on a feeding tube to live.” “I cannot control my bladder or bowels.” Then the patient answers them by checking off if the health state is worse, better, or neither worse nor better than dying comfortably.
“We should think about advance directives as clinical documents, not legal documents,” Halpern said. “Like anything people wish to write on a napkin and hand to their physician to express what they want done for them, that should inform what the clinician does. It is just like how any in-person conversation would be an opportunity for people to share what is important to them.”
Caroline McIntyre, 56, had already thought deeply about these directives.
She has stage IV breast cancer with a life expectancy of two to 10 years. She was choosing to believe that she had a decade left, planning trips this year to Glacier National Park and the Canadian Rockies.
She already had an advance directive, outlining that she does not want artificial nutrition such as a feeding tube. She doesn’t want a breathing tube down her throat. She doesn’t want someone pounding on her chest.
In mid-March, with local coronavirus cases starting to climb, McIntyre thought back to these documents and decided to bring them along to a recent doctor’s appointment.
If she were to get sick with coronavirus, she wants her wishes in her medical file. And she doesn’t want her husband or kids, ages 23 and 26, worrying about how to make an end-of-life decision on her behalf.
She is on medical leave from her job as a nurse at Fox Chase Cancer Center and her daughter decided to live with friends so she wouldn’t risk getting her mother sick. McIntyre’s cancer treatments make her especially vulnerable to the coronavirus.
“The clock is ticking for me now,” McIntyre said. “It kind of brought it home that yeah, I can really die this year if I would catch this thing."
Elizabeth Rager, of Wallingford, has long had creating a living will on her to-do list.
She’s been thinking about it since a friend died in August. But the 50-year-old mother of two boys, ages 13 and 16, did not think she was at risk of becoming ill any time soon. Watching the news about coronavirus changed her attitude.
It only took 45 minutes to talk through her end-of-life preferences with her lawyer and receive a draft of the documents. She decided to leave medical interventions up to the recommendations of the doctors. She didn’t want her family to have to make any hard decisions on her behalf if she could not speak for herself.
“It’s just incredibly sad that people are alone during the last moment of their lives," Rager said. "That is the only thing we have at the end of our lives: your family around you. You at least have the ability to look at the people who loved you and know you have been good in the world.”