Doctors often dodge the subject. Patients are reluctant to raise it. But avoiding the issue can mean surrendering control of an intensely personal process.
What kind of medical care do we want near the end of life, if we are struck with a serious illness or our heart stops, we stop breathing or can no longer eat or speak? Do we want to prolong life no matter what? Or are we sometimes simply prolonging death?
"What happens is often people end up in hospital, they end up with all sorts of interventions and yet no one ever gave them a choice," said Hilton Raethel, chief health officer for Hawaii Medical Service Association. "The last thing we want is for people to get unwanted care, to have something done to them that they would never choose."
Hawaii is forging a new path in advanced care planning by giving patients an up-close look at what to expect when their health fails, with a series of short videos made by a Harvard professor that HMSA is adapting for use across the islands, both in and out of its network.
Designed as a springboard for conversation between patients and their doctors, the videos illustrate medical conditions and treatment options in a straightforward, neutral style.
What is it like being on a ventilator? What does advanced dementia entail? How does a feeding tube work? What does cardiopulmonary resuscitation look like? What are the likely results?
"So many patients say, ‘I had no idea that’s what it looked like — on television it doesn’t look that violent and everybody survives,’" said Dr. Angelo Volandes, an internist and researcher at Harvard Medical School and Massachusetts General Hospital. "One patient told me if a picture speaks a thousand words, a video speaks hundreds of thousands of words."
Volandes and his wife, Dr. Aretha Delight Davis, founded Advance Care Planning Decisions, a nonprofit foundation, to produce the videos in the hope of educating patients.
HMSA has made the videos available in every major hospital and hospice in Hawaii, and is working to get them into every skilled nursing facility as well, Raethel said. It also plans to provide them to all 900 primary care providers in its network as well as some specialists.
"We want to get more people comfortable talking about this very difficult subject around end of life, with the goal of getting people involved in their care," Raethel said. "We believe strongly in choice."
He added, "Not a lot of doctors are comfortable or confident in having those types of discussions."
HMSA, the state’s largest health insurer, is working with Volandes to create new versions of the videos that feature Hawaii residents and languages commonly spoken in the islands, such as Japanese, Ilocano and Mandarin as well as English.
"It’s one of the biggest and most exciting projects in American health care that’s taking place right now," Volandes said. "What they are trying to do is really transform health care in the state of Hawaii. HMSA is footing the bill for the entire state. It doesn’t matter if you’re a Kaiser patient, or Humana, or with VA and Tripler."
The films have been field-tested in more than 40 health systems and used by tens of thousands of people, but Hawaii is their first statewide debut, he said. The videos are not available for individual viewing at home because they are meant to be part of a conversation with a clinician, whether a doctor, nurse, social worker, nurse or chaplain. Patients can ask their providers for a chance to see them.
"The videos are short, simple and values-neutral," Volandes emphasized. "We want to make sure that it’s impartial, not pushing one way or the other. People ask me, ‘Angelo, what is the right decision?’ The right decision is what the patient wants once they are fully informed."
The typical medical approach in Hawaii and across the country is to pull out all the stops, resuscitate and prolong life at all costs, with high-tech interventions. Once they learn more about their options through the videos, many patients with terminal illnesses say they’d prefer a different path, Volandes and his research team have found.
Many surveys have shown that most patients prefer to die at home rather than in a hospital. Yet Hawaii has the second-highest rate in the nation of elderly patients who end up dying in the hospital, at 33 percent, according to United Health Foundation’s 2014 America’s Health Rankings Senior Report.
Hawaii residents also have one of the lowest rates among the states of the use of hospice, which focuses on making terminally ill people as comfortable as possible, usually at home.
Education is key to empowering patients to make their own choices, according to Dr. Rae Seitz, HMSA’s medical director, who was recognized by her peers nationally last year as a visionary in hospice and palliative medicine.
"I look at medicine as almost like a foreign country," she explained. "People get plopped down into it unprepared. They don’t speak the language. They don’t know the rituals. … How do we share information so that each individual to the extent possible is able to be an active participant in their own care? The videos are one tool that we think can help us do this."
She added, "A lot of families are afraid to do the wrong thing. Typically they have to make a decision about their loved ones where the loved ones cannot express what they want. What’s missing is the voice of the patient, and everybody loses in that situation."
Patients may make their wishes known through an Advance Health Care Directive, also known as a Living Will, and a form signed by their medical provider known as Provider Orders for Life-Sustaining Treatment.
Dr. Lance Kurata, an adult medicine specialist in private practice at Kuakini Medical Center, said the videos give a more accurate and nuanced view than people get from TV shows or checking boxes on a paper form about interventions like CPR.
"Most people do not make it through these things, and if they do, often they don’t do well," he said. "Sometimes we are prolonging death rather than prolonging life, especially when you are getting into the older age group."
Kurata said, "Research shows that a lot of the time, we’re doing resuscitation with elderly people for legal reasons, to cover our butts, not because they want it. We always have to get consent for blood transfusions, for surgeries. Well, this is another kind of procedure, and we should get consent ahead of time."
The videos range from less than three minutes to about seven minutes. The online library of about 30 titles includes "Goals of Care," "Heart Failure," "Advanced Dementia," "Advanced Cancer," "CPR," "Feeding Tubes" and "Introduction to Hospice."
Some Hawaii videos have already been produced in Ilocano, Tagalog, Mandarin and Japanese, and more translations are planned, including Korean, Vietnamese and Chuukese. While often viewed toward the end of life, the videos are also relevant for younger folks, Volandes said, because "we are all going to die someday."
Makiki resident Michael Nagasaki cares for his mother, aunt and uncle, who are all in their 90s. They recently watched videos on an iPad in Kurata’s examining room.
After seeing what CPR and electric shocks entail and learning the likely consequences at their advanced age, "Their thought was, ‘Don’t do anything, don’t resuscitate me. Just let me go,’" Nagasaki said.
He recalled the case of a friend whose 90-year-old mother received CPR at his son’s request after her heart stopped. "She stayed in hospital for nine more months, alive, suffering," with a broken rib.
A plain-spoken man, Nagasaki learned about death as at an early age. He was 10 when he saw his father suffer a brain hemorrhage and die.
"They could have saved him or put him on something," he said, adding that his father probably would have remained in a vegetative state. "In those days the doctors made the decisions."
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On the Net:
» To see an introductory video and learn more, visit acpdecisions.org.
