When Ted Goff was hospitalized late last year, barely breathing and with advanced emphysema, his doctor said the prognosis was bad. They talked about Goff’s last wishes and whether he wanted to be placed on a breathing machine. Goff wasn’t sure. So his doctor suggested he watch a video explaining this technique and other options for end-of-life care.
The video was direct and dramatic. In a demonstration of cardiopulmonary resuscitation, or CPR, a technician pushed down hard on the chest of a dummy. A white-coated doctor narrating the video laid out grim odds: “Most of the time, in patients with advanced disease, CPR does not work,” she said. As a result, patients need a ventilator to help them continue breathing. Goff watched a technician maneuver a metal instrument down the dummy’s throat to prepare for insertion of a tube that pushes air into the lungs. Then the camera zoomed to a close-up of an elderly patient, eyes closed, in a hospital bed. He had a breathing tube in his mouth. Equipment surrounded his bed.
“You cannot eat or talk while on this machine,” the doctor on the video said.
That made up Ted Goff’s mind.
“ ‘I ain’t gonna do that,’ ” his wife, Linda, recalled the retired businessman saying. “Putting him on a ventilator, opening an airway, pounding on your chest . . . . No, he didn’t like any of that. . . . It’s just not something he wanted to experience,” she said.
Goff wanted only to be kept comfortable until the end came. The video made him realize that a form he signed years before had directed doctors to put him on a ventilator, something he had always adamantly opposed.
Rare is the person who is willing to grapple openly with death. Health-care providers often don’t talk to patients about their preferences. And patients and their families often don’t know their options and avoid asking about them. For patients approaching the end of life, that can mean not knowing about palliative-care alternatives, which research has shown can significantly improve patient satisfaction and quality of life. Instead, they continue to get aggressive treatment.
Clinicians and others trying to improve end-of-life communication between doctors and their patient have turned for help to a set of videos such as the one that Goff saw. Developed by two Harvard doctors, the videos aim to better inform patients about their medical options while easing the way for frank discussions with health-care providers.
The videos deal with all the leading causes of death — including heart disease and dementia — and are tailored for each disease. In clinical trials, researchers found that dying patients were less likely to want aggressive end-of-life care if they had watched the videos than if they had simply been told about the procedures.
The videos are not intended to be a substitute for talking with doctors and other providers. And they need to be used in the appropriate context. “Not every tool is good for everyone,” said Valerie Sirani, a palliative-care nurse who has used the videos with some of her patients at Kaiser Permanente’s skilled nursing facilities in suburban Maryland. “You don’t want to exacerbate anticipated grief.”
Angelo Volandes, an internist and researcher at Harvard Medical School and Massachusetts General Hospital, co-founded the nonprofit foundation in 2010 that makes and distributes the videos.“What we’re finding is [that] the videos spark the conversation,” he said. “It flips the power structure of the patient-doctor relationship.”
More than 50 health-care systems — including all hospitals in Hawaii, the Everett Clinic in Washington state and Kaiser Permanente — are using the videos,Volandes said. Carilion Clinic, which operates 10 hospitals in western Virginia and southern West Virginia, began testing the videos May 1 with patients who have advanced dementia. Volandes said the nonprofit foundation, Advance Care Planning Decisions, can’t keep up with requests.
Health system executives say they are using the videos because of the testing outcomes Volandes has reported. In 13 clinical trials so far, patient and family satisfaction has been overwhelmingly positive, with patients saying they were knowledgeable about their options and comfortable with their decisions, the studies show. In one trial of 150 advanced cancer patients, 48 percent of the 80 patients who listened to a verbal narrative describing CPR wanted the treatment, 51 percent did not, and 1 percent were uncertain. Of the 70 patients who listened to the same narrative and viewed a video about CPR, only 20 percent wanted CPR, and 79 percent did not, and 1 percent were uncertain, according to a study in the Journal of Clinical Oncology.
What makes Volandes’s videos unique “is the fact that he has studied these tools in multiple randomized controlled trials,” which is the strongest type of research data, said Daniel Johnson, who is the clinical lead for palliative care at Kaiser Permanente.
There is growing interest in end-of-life issues. The Conversation Project, launched by columnist Ellen Goodman, provides starter kits online to help people have “the conversation” with loved ones. A geriatrician at the University of California at San Francisco has developed Prepare, a Web site that walks individuals through the advance-care-planning process. A group of clinicians launched a nonprofit, VitalTalk, to train doctors in giving bad news to patients.
There is also pressure from baby boomers, who want better information about where and how their parents are receiving end-of-life care, said Rebecca Aslakson, an assistant professor at the Johns Hopkins University School of Medicine, who works in critical care and palliative care. “And just as they’ve changed everything else, baby boomers are going to change the way that we die.”
Volandes and his team say the purpose of the videos is to ensure that patients have clear information about their medical options.
This is especially important, he says, as technological advances in medicine can extend life much longer than in the past. That can mean that some patients are able to live longer, quality lives. But it also can mean a bias toward aggressive care, experts say. It’s hard to predict which sick patient is going to die imminently and which might get better with — or even without — a lot of expensive care. That uncertainty puts pressure on physicians, often from family members, to take heroic measures to keep their loved ones alive, even when the chances of prolonged life are slim.
There is also a tremendous cost issue: The Centers for Medicare and Medicaid Services estimates that nearly 30 percent of Medicare expenditures is on patients’ last year of life. In 2011, total Medicare spending was nearly $554 billion, according to government figures.
The videos, available in several languages, including Spanish and Mandarin, show real patients living with diseases such as cancer, dementia and congestive heart failure, and undergoing life-sustaining procedures. They were scripted by a team of experts for accuracy and balance: Volandes said it was important that the presentation not steer patients one way or another. Each video took one to two years to make: about a year to develop with expert panels and another year for filming and editing.
The nonprofit that Volandes founded with his partner and wife, Aretha Davis, makes the videos available for a fee to health-care institutions only. About a dozen have been produced; more are in the works. Volandes said he decided against making them available directly to patients because he doesn’t want them to be a substitute for face-to-face conversations with doctors.
For some people, though, watching a video may make it easier to absorb information than a conversation with their longtime doctor, experts say.
“You may find it difficult to discuss this,” a doctor says in one video. “But as it turns out, different people have different ideas about what is best for them. If we talk about your choices ahead of time, you can let your doctor know now what you would want if you were to become very sick.”
At Kaiser Permanente, which has used the videos for the past three years, Johnson said feedback has been “almost uniformly positive” from patients and families. Kaiser leaves it up to individual practitioners to decide whether, how and when to use the videos.
Sirani, the palliative care nurse, said she has used the videos about a dozen times in the past three years. Visual explanations make it easier for people to really understand what may happen, she said.
In one case, two friends who were health-care proxies for a woman with dementia didn’t understand her advance directive. Would she have wanted a feeding tube? They weren’t sure. So Sirani showed them the video that explained the procedure. Feeding tubes may not prolong life and can caused complications, the narrator said. The friends decided against it, choosing hospice care for the woman at her home.
In another case, a dying patient had no advance directive. All of her several adult children were her legal health-care proxies. “But they were all kind of at different places” about what they wanted for their mother, Sirani said.
At first, they thought a feeding tube would somehow make her better. But after seeing the video, they decided against it and chose hospice at home. They made sure, though, that she got her favorite strawberry ice cream.
The Everett Clinic, one of the largest health-care systems in Washington state, began using the videos about a year ago. Elizabeth Marshall, who directs the clinic’s life and wishes task force, knew they might rub doctors the wrong way at first. Narration is slow. Content is geared to a fourth-grade level. When doctors view them, some say “they find them dumbed-down,” she said.
Rob Scarr, an Everett internist, said he prefers to talk with patients and family members himself rather than have them watch the videos. His patients, he said, tend to be healthier and better-educated than most: “I would use these videos if the family didn’t understand what I was talking about. But it doesn’t come up very often, and most of the time, either the patient has made a choice that made sense, or the family understands what the person would have wanted. So I don’t find that as useful to me.”
By contrast, internist Shipa Jog has made the videos part of routine annual checkups for her Medicare patients; more than 50 have seen them in the past year. The checkup, and a related discussion about an end-of-life form that Everett uses, provides useful context for the video.
“I say exactly what they say in the video,” she said. But if patients don’t understand, she asks whether they want to watch “a nice little video” and “almost always, they say, ‘Yes.’ ”
The videos help dispel common misconceptions that CPR will bring patients back to their original state of health. Unlike what is commonly depicted on television, she said, that is not a given, especially for frail, elderly patients.
The visual tools also help family members make better decisions. If patients don’t make their wishes known, “guilt-ridden” family members may seek the most aggressive care, said Ron Green, an Everett pulmonologist. “The son hasn’t seen his father in 30 years and is trying to make up for 30 years of neglect” by asking doctors “to do whatever you can,” Green said.
Ted Goff, who is 73, does not want that approach. A longtime smoker who owned a drywall business, he spends most of his waking hours at home in Arlington, Wash., watching television. His severe breathing difficulties make talking virtually impossible. Green gave him and his wife, Linda, the bad news about his condition late last year.
The couple then watched the video, which told them the main goal of comfort care is to maximize comfort and relieve symptoms. Treatments are only used if they help relieve uncomfortable symptoms, such as pain, nausea and trouble breathing. People who choose this approach are usually treated at home, in a hospice setting or in a nursing home. Comfort care does not include CPR and breathing machines, and usually would not include hospitalization.
The doctor narrating the video also said: “People who choose comfort care choose to avoid these procedures even though without them, they would die.”
“When it was over, you look at each other and you go, ‘Wow, good thing we watched this.’ . . . It eliminates a lot of things the family doesn’t have to witness,” said Linda Goff. They have a son and a daughter.
It was also emotionally difficult. “I teared up,” she said. “It was hard.”
But now they have an advance directive that spells out her husband’s wishes: No CPR or anything artificial, including nutrition, if he can’t take it orally; antibiotics to keep him comfortable if he develops an infection.
Linda Goff shredded the old form that Ted had filled out incorrectly years ago, known as a Physician Orders for Life Sustaining Treatment, or POLST. She carries the new one, a green paper, in her purse. “There has to be a little dignity and a little right to die the way you want to,” she said.