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Woman Searching for Place to Die Finds Little Support

Kate McMahon
"My existence right now is certainly not living. But I’m alive,” said Norma Chaty, 83. ";s:

Every other day, a driver picked up Norma Chaty and took her to Portland Adventist Medical Center. 

“You go, you have your blood drawn and sent to the lab. Then, depending on the count, you need an infusion or you don’t,” Chaty, 83, said.

Chaty receives a blood transfusion about once a week. Without it, she would die in days.

“Then the poker—the professional poker, she just roams each floor, finding veins. And then time-wise, each unit is three hours. So Ride Connection picks me up at 8. I’m there at 8:30, and get home in time for Rachel Maddow, which is 6,” she said. “My existence right now is certainly not living. But I’m alive.” 

Preparing for the End 

In late 2012, Chaty was diagnosed with a blood disease that turned into terminal leukemia. The transfusions that kept her alive cost about $2,500 each. Chaty paid $15 out of pocket; Medicare and insurance picked up the rest.

A year after her diagnosis, Chaty decided living this way just wasn’t worth it. So she decided to prepare for the inevitable.

“I asked my doctor, ‘When I stop infusions, what will I have? Five, 10 days?’ And she said yes,” Chaty said.

But what Chaty didn’t expect was to find herself in the gap between medical care and end of life care. The pragmatic questions she faced became a delicate balancing act between time and money. 

“Do I have enough money to go into a foster care home, etcetera? And to coordinate my death so that my body is still fresh when they come to pick me up? When I die, I want my body to be donated,” she said.

So Chaty set out to orchestrate her final blood transfusion to coincide with finding a place to die. She wanted a room of her own and hospice care. But she wasn’t eligible for hospice because she was still getting life-prolonging blood transfusions. 

Trapped in a Gray Area

Let’s take a step back. It used to be that Medicare made it easier for people to start hospice because of two specific diagnoses: failure to thrive and debility. But new Medicare rules under the Affordable Care Act cut them out. That means more people like Chaty end up living with serious illness, but lacking support. 

“If you’re not willing to forego further therapeutic efforts, then you can’t go to hospice,” said Arthur Caplan, who heads the bioethics division of New York University Langon Medical Center. “You almost have to say, ‘I’m done. I’m ready to die. No more treatments that may, in any way, extend my life.”’

Caplan says advances in medical care come with a price: “Enormous costs at the end of life for very, very sick people who may not even be having really much of a quality of life.”

“Yet the public has made it very clear: it doesn’t want to hear about death panels. It doesn’t want to hear about rationing, at least when it comes to end-of-life care issues. So, rightly or wrongly, we’re paying,” he said.

Chaty did get some help from palliative care. It’s a team approach dispatched by hospitals toward symptom management, patient goals and quality of life. Her palliative care nurse practitioner Joanna Lezak saw her struggle through her decisions. 

“It was very difficult to say, ‘When am I done? When am I going to die? When am I going to stop blood transfusions?’ When [the reality was’ they were still working for her. They were still allowing her to be as independent as she was,” Lezak said.

“For people like Norma, the tragedy is that she was left to navigate a very complex medical system on her own. I think we need to start asking ourselves these questions and maybe revamp some of the medical system so that it doesn’t create so many people like Norma." 

The Economics of Dying

Chaty researched her options. But it turns out she fell into another gap. Her $2,400 monthly income from social security and pension checks proved too much to qualify her for Medicaid, which would have helped pay for adult foster care. At the same time, a long list of foster homes rejected her because she couldn’t afford the standard rate on her own. 

Then one of the foster homeowners had a change of heart and let her in at a discount because, she figured, Chaty wouldn’t be there long. 

Chaty wrote a check for all the money she had left, about $2,000. The plan was coming together. She could now end the blood transfusions and go on hospice. 

On moving day, two hospice workers helped Chaty pack a small bag. She left behind her wig, her bed unmade. Then she was lifted into a medical van and driven to her final home.

What she’d gone through, she realized, was a lesson in the business of dying.

“Unless you’re very, very poor, or very, very rich. You ain’t gonna get it. You’re gonna end up in a place like this, which is just a stopover. And I think that people should know that,” she said.

Chaty lived at that stopover 10 days. It wasn’t perfect, but it was comfortable, and she wasn’t alone. A few hours after she died, Chaty got her final wish: her body was collected and given to medical research.