Many older adults with multiple illnesses and disabilities would like to talk in detail with their doctor about their prognosis — but such discussions are rare. That's the finding from a new study from researchers at the University of California, San Francisco published in the Journal of General Internal Medicine in November.
The investigators interviewed 60 adults with the mean age of 78 who had been recruited from an all-inclusive care facility for the elderly in San Francisco. The patients, a diverse group of English-, Spanish-, and Cantonese-speaking seniors, were asked to consider scenarios in which they had one year and five years to live.
If they had an estimated five years or less to live, 65 percent of the study participants wanted to discuss their prognosis with a doctor; if they were thought to have a year or less to live, that percentage jumped to 75 percent. But in reality, only one of the study participants had ever actually discussed prognosis with a doctor.
“You'd think that research such as this would have been done a lot, but it hasn't,” said Robert McCann, MD, professor of medicine and acting chief of the Division of Geriatrics at the University of Rochester Medical Center, who was not involved with the study. He commended the study's design and noted that he is considering presenting it for discussion at the national meetings of the American College of Physicians and American Geriatrics Society.
“They have a good cross-section of the frail elderly, covering several different nationalities, and it seems clear that most patients — although not all — do want to discuss prognosis,” Dr. McCann said. “And in this model [of care], where they're generally known for doing very good end-of-life care, I was surprised to see that only one patient reported that someone had talked to them about prognosis.”
That finding wasn't surprising at all to Janis Miyasaki, MD, associate clinical director and deputy physician-in-chief of the Movement Disorders Centre at Toronto Western Hospital, University Health Network at the University of Toronto. “Certainly, the lack of information for patients and the challenge of conveying prognosis but maintaining hope for patients is part of the reason why I started our palliative care program,” she said. “Patients seem so woefully unprepared by their doctors for the trajectory of their disease.”
PROGNOSIS, DIFFERENT FOR DOCTORS AND PATIENTS
Even when doctors do discuss prognosis with their patients, they may go about it the wrong way. Talking about prognosis does not simply mean predicting how long a person has left to live, cautioned Wendy Johnston, MD, associate professor of neurology and medical director of the neuromuscular/ALS program at the University of Alberta Hospital in Edmonton, Canada. “My experience in ALS is that neurologists tend to focus too much on statistical prognosis. It's not uncommon for my patients to tell me that the first neurologist to diagnose them told them something like, ‘You have two years left to live,’ rather than asking them about how they wanted to live and what they wanted to do as their illness progressed.”
On the other hand, some neurologists resist talking about death associated with a patient's neurologic condition altogether. “I gave a talk on palliative care in Parkinson disease to a meeting of the cream of the crop of Parkinson specialists,” said Dr. Miyasaki. “Even there, some people said to me, ‘It's wrong to tell patients they will die of Parkinson.’ I said, ‘But they do! They die of aspiration pneumonia, falls, or other complications they wouldn't otherwise have if they didn't have Parkinson disease.’”
That doesn't mean that neurologists should say, “You're going to die of Parkinson [disease]” when a patient gets their diagnosis, Dr. Miyasaki quickly added. “But I've had patients ask me, ‘Will I die of this?’ and I think it's wrong to say no. When they ask me, I tell them that many years, sometimes even decades after diagnosis, there will come a time when the pills are less effective, their memory and thinking are less clear, and they become more restricted in what they can do. At that time, I say, dying of the complications of Parkinson [disease] is the usual course.”
NO CRYSTAL BALLS
In reality, it's fairly hard for doctors to predict death within the kind of time frame that the study discusses, Dr. Johnston said. “In this study, people really wanted to know if their doctor thought they had less than a year left to live, but how do we know that? When someone is imminently dying, within weeks, we can be fairly certain of what's going to happen. But projecting out a year is very difficult, and I think a lot of doctors don't approach it at all because they're not sure.”
That's doing patients a disservice, she said. Rather than talking about death, Dr. Johnston frames the discussion with her patients around the risk of a life-threatening event. “I'll say, ‘I think you're at risk of a life-threatening event this year. We need to talk about that because, if it happens, I want to know what kind of interventions you want and how intense you want them to be. How much medical care would you find appropriate? Would you want that if we felt there wasn't a good chance of bringing you back to the quality of life you currently enjoy?’ That opens up the conversation.”
Dr. Miyasaki views the neurologist's job, in this context, as being to help the patient and his or her family plan for what's coming next. “The tension, of course, is deciding just how much information patients need and when they need it. That's part of the art of medicine, to know when they're ready,” she said. “Some people want to know right up front what's going to happen. They'll say things like, ‘I own a business, I'm responsible for people's livelihoods. What do I have to plan for?’ Other people will say ‘I don't want to know. It's overwhelming just coping with the diagnosis.’;”
But without such conversations, patients' daily lives may ultimately become untenable if their neurologist hasn't prepared them for declines in function that may be imminent. “The quite common scenario would be patients who have terrible difficulties walking, but still have a multi-level home with the main bathroom on the second floor,” Dr. Miyasaki observed. “For many people, the acceptance that this is going to happen is a big shock. It's such a practical thing, but it's often not covered when we discuss how the patients are doing. We're more comfortable talking about pills and responses to treatments.”
STARTING THE CONVERSATION
Dr. Miyasaki feels that neurologists should be discussing prognosis and what's coming next at every visit with patients whose conditions are chronic and progressive. “It's important that you keep in mind where on the disease trajectory the person is. If you do that, you can start to prepare a patient months or years in advance for what is coming up. You must try to manage symptoms today, of course, but also try to give them an image of what is coming in the future so that they're not scrambling.”
She described one of her patients whose wife recently died of metastatic cancer. “He was quite a bit older than she was, and he'd always assumed he would die first,” says Dr. Miyasaki. “But because we talked about what his needs would be, his wife planned for everything and hired a caregiver before she became really ill.”
Approach the discussion in an open-ended way, Dr. Johnston suggested. “You can start the conversation by saying, ‘When you look ahead, what's your understanding?’”
While teaching medical students, she recalled rounding on a patient with chronic obstructive pulmonary disease who'd had several hospitalizations. “I asked him, ‘Looking ahead, what do you see?’ He shook his head and made a thumbs-down motion and said ‘Nothing good.’ That was an opening for me to say, ‘That sounds pretty depressing. Tell me what you mean. Is there anything we can do to help you with that? What are you afraid of?’”
Dr. McCann suggested that neurologists “open up the conversation by asking permission to talk about the big picture. Ask questions like: What's going on at home? What's your understanding of your illness? How are we going to treat you when your disease progresses?”
Consider how to prepare your patient for the likely next stage of their disease. “Are you asking them how they're doing at work? Whether it's time to consider modifying their work schedule and going on disability?” asks Miyasaki. “What about their home? Can it be modified to have a main floor full bathroom? How are you going to manage your annual vacation when someone needs a wheelchair and might be confused on the plane? Help them come up with practical solutions, and have resources available.”
That can take much more time and be more costly, of course. Dr. Miyasaki's recently widowed patient once asked her if she was a social worker as well. “A lot of the time!” she responded with a laugh. “If we really care about our patients, we have to think about how we would want our grandparents to be treated. What would you really want for someone you care about? If you think about it that way, you'll come up with the right answers and strategies. Small changes can make big differences for your patients and families. And while that may take more time during the patient visits, we could probably avoid a lot of unnecessary hospitalizations and unnecessary injuries if we helped our patients plan better and anticipated their needs.”
“It's not one discussion, it's a trip you take with your patient and their family, and you will have a series of discussions as function declines,” McCann says. “This kind of discussion empowers them and helps them make better choices.”