Videos On End-Of-Life Choices Ease Tough Conversation
Lena Katakura's father is 81. He was recently diagnosed with esophageal cancer and doctors don't expect him to survive the illness. Katakura says a nurse at their Honolulu hospital gave them a form to fill out to indicate what kind of treatment he'd want at the end of life.
"And we're looking through that and going, 'Oh my, now how're we going to do this?' " says Katakura. Then the nurse offered to show them a short video and Katakura and her father said, "Great!"
While the majority of Americans say they'd rather die at home, in many cases, that's not what happens. Among people 65 years of age or more, 63 percent die in hospitals or nursing homes, federal statistics suggest, frequently receiving treatment that's painful, invasive and ultimately ineffective. And Hawaii is one of the states where people are most likely to die in the hospital.
The video that Katakura and her father watched pulled no punches. It begins: "You're being shown this video because you have an illness that cannot be cured." Then, in an undramatic fashion, it shows what's involved in CPR, explains what it's like to be on a ventilator, and shows patients in an intensive care unit hooked up to multiple tubes. "You can see what's really going to be done to you," says Katakura.
And you can decide not to have it done. The video explains that you can choose life-prolonging care, limited medical care or comfort care.
The simple, short videos are being shown in medical offices, clinics and hospitals all over Hawaii now. And they're being shown in many of the languages that Hawaiians speak: Tagalog, Samoan and Japanese, among others. Katakura and her father watched the video both in English and in Japanese.
"Some patients have said, 'Wow, nobody's ever asked me what's important to me before,' " says Dr. Rae Seitz, a medical director with the nonprofit Hawaii Medical Service Association — the state's largest health insurer. She says there are a number of obstacles that keep patients from getting the treatment they want.
Some health care providers may talk about it, she says; some may not; and each doctor, clinic, hospital and nursing home may have different standards. But also "it takes a lot of time, and currently nobody has a good payment system for that," says Seitz.
Out of 50 states, Hawaii ranks 49th in the use of home health care services toward the end of life. Seitz wanted to change that. She had heard about these videos, produced by Dr. Angelo Volandes of Harvard Medical School. She thought maybe they could help. So she brought Volandes to Hawaii to give a little show-and-tell for some health care providers.
"I frankly was astounded," Seitz says, "at how excited people became when they saw these videos."
Volandes thinks they were excited and — maybe — a little bit relieved.
"Physicians and medical students aren't often trained to have these conversations," says Volandes. "I, too, had difficulty having this conversation, and sometimes words aren't enough."
Volandes is the author of a book called The Conversation, which tells the stories of some of the patients he encountered early in his career and their end-of-life experiences. He describes aggressive interventions performed on patients with advanced cases of cancer or dementia. In the book, they suffer one complication after another. There is never a happy ending.
But the videos are not designed to persuade patients to opt for less aggressive care, Volandes says. "I tell people the right choice is the one that you make — as long as you are fully informed of what the risks and benefits are."
Still, studies show that the vast majority of people who see these videos usually choose comfort care — the least aggressive treatment. That's compared with patients who just have a chat with a doctor.
Every health care provider in Hawaii currently has access to the videos, courtesy of the Hawaii Medical Service Association. The impact on patients will be studied for three years. But one thing that won't be examined is how patients' choices affect cost, Seitz says.
"When a person dies in hospice care at home," she says, "it's not as costly as dying in the ICU. But it's also more likely to be peaceful and dignified. So people can accuse insurance companies [of pushing down costs] all they want to, but what I would look at is: Are people getting the kind of care that they want?"
Katakura's father is. He's at home with her, and receiving hospice services. After seeing the videos, she says, he chose comfort care only.
If she were him, she'd want that too, Katakura says. "So I was satisfied with his decision."
Now, she says, she needs to make a decision for the kind of care she wants for herself at the end of life — while it's still, she hopes, a long way off.
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Transcript
ARUN RATH, HOST:
No one wants to talk about the end of life, but that's a problem because if you don't plan for the end of life, decisions will get made for you. Most people say they prefer to die at home, but most old people end up dying in hospitals or nursing homes, frequently receiving treatment that's painful, invasive and ultimately ineffective. Hawaii is one of the states where people are most likely to die in the hospital, but they're trying to change that. NPR's Ina Jaffe reports.
INA JAFFE, BYLINE: Lena Katakura's father is 81. He was recently diagnosed with esophageal cancer, and doctors don't expect him to survive. Katakura says the nurse at their Honolulu hospital gave them a form to fill out indicating what kind of treatment he'd want at the end of life.
LENA KATAKURA: We're looking through that and going, oh my, OK, now, how are we going to do this? And she said, oh, no, no, we'll show you the video. We said, oh, OK, great.
(SOUNDBITE OF VIDEO)
UNIDENTIFIED WOMAN #1: You're being shown this video because you have an illness that cannot be cured.
KATAKURA: On the video, it shows the hospital scenes in the background, right? So you get to see what really is going to be done to you on the video.
JAFFE: You can see CPR and breathing machines and what it's like in the intensive care unit. And you can choose not to have any of that.
(SOUNDBITE OF VIDEO)
UNIDENTIFIED WOMAN #1: There are three general approaches to medical care if you become very sick. They are life-prolonging care, limited medical care and comfort care.
JAFFE: These simple, short videos are being shown in medical offices, clinics and hospitals all over Hawaii now in the many languages that Hawaiians speak.
(SOUNDBITE OF VIDEO)
UNIDENTIFIED WOMAN #2: (Foreign language spoken).
JAFFE: Lena Katakura and her father watched the video in English and Japanese.
RAE SEITZ: Some patients have said, wow, nobody's ever asked me what's important to me before.
JAFFE: Dr. Rae Seitz is a medical director with the nonprofit Hawaii Medical Service Association, the state's largest health insurer. She says there are a number of obstacles that keep patients from getting the treatment they want. Some healthcare providers may talk about it. Some may not. And each doctor, clinic, hospital and nursing home may have different standards. Then there's this.
SEITZ: It takes a lot of time, and currently, nobody has a good payment system for that.
JAFFE: Out of 50 states, Hawaii ranks 49th in the use of home healthcare services in the last six months of life. Seitz wanted to change that, and she'd heard about these videos produced by Dr. Angelo Volandes of Harvard Medical School. Maybe they could help. So she brought Volandes to Hawaii to give a little show and tell for some health care providers.
SEITZ: As I, frankly, was astounded at how excited people became when they saw these videos.
JAFFE: Excited and maybe relieved, says Angelo Volandes.
ANGELO VOLANDES: You know, physicians, medical students aren't often trained to have these conversations, so I, too, had difficulty having this conversation. And sometimes words aren't enough.
JAFFE: Volandes is the author of a book called "The Conversation." He tells the stories of some of the patients he encountered early in his career and their end of life experiences. He describes aggressive interventions performed on patients with advanced cases of cancer or dementia. They suffer one complication after another. There is never a happy ending. But Volandes says the videos are not designed to persuade patients to opt for less aggressive care.
VOLANDES: I tell people the right choice is the one that you make as long as you are fully informed of what the risks and benefits are.
JAFFE: Still, studies show that the vast majority of people who see these videos usually choose comfort care, the least aggressive treatment. That's compared to patients who just have a chat with a doctor. Every health care provider in Hawaii currently has access to the videos, courtesy of the Hawaii Medical Service Association. The impact on patients will be studied for three years, but one thing that won't be examined is how patients' choices affect cost. Again, insurance company medical director Rae Seitz.
SEITZ: When a person dies in hospice care at home, it's not as costly as dying in the ICU, but it's also more likely to be peaceful and dignified. So people can accuse insurance companies all they want to, but what I would look at is are people getting the kind of care that they want?
JAFFE: Lena Katakura's father is. He's at home with her and receiving hospice services. After seeing the video, she says, he chose comfort care only.
KATAKURA: And if I was him, I'd want that, too, so I was satisfied with his decision.
JAFFE: Now, she says, she needs to make a decision for the kind of care she wants for herself at the end of life, hopefully while that's still a long way off. Ina Jaffe, NPR News. Transcript provided by NPR, Copyright NPR.
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