Part of the Transforming Life as We Age Special Report
Say you have a preference about the kind of treatment you want from your doctor. Maybe you dislike the cost, the risk of side effects or just the idea of depending on prescription medications and building your day-to-day routines around them. You want to give priority to alternative treatments like walking, yoga, nutrition or meditation whenever that makes sense.
Or maybe there’s something important in your life — a family event, a sport you want to pursue, a craft — and you want to keep your health issues and your health care from interfering with it if you can.
How do you make sure that your preferences and priorities get on the agenda with your health care providers? And how do you make sure they stay on the agenda beyond a single office visit?
“You have a right to ask” for that, says Dr. Phyllis Hayes-Reams, chief of the department of geriatrics for Kaiser Permanente of Southern California. Ideas like patient preference and quality of life tend to get linked to end-of-life care, but health care providers “want to move the conversation upstream” she says, to all the years that come before end of life.
What You Want Is Person-Centered Care
“It’s the things that aren’t said that cause us to go down the wrong path” sometimes, Hayes-Reams adds. “Most physicians would welcome the opportunity to know what’s important to the patient, because it gives them some guidance.” She acknowledges that time-constrained appointments can make this a challenge on both sides of the conversation.
Dr. Debra Saliba served on an American Geriatrics Society panel a couple years ago that pinned down a definition of person-centered care and the central role that people’s individual preferences and goals should have in shaping their care. In short, the definition said that:
- providers should ask about a person’s values, goals and preferences
- they should use that information to guide all aspects of the person’s care
- and they should do so in a coordinated and collaborative way as a health care team, including coordinating with the patient and other people the patient may want to include in the care relationship.
Saliba, a physician in the Los Angeles Veterans Administration health system, is also director of the University of California Los Angeles/Jewish Home Borun Center for Gerontological Research and the new president of the American Geriatrics Society (AGS). The definition of person-centered care mirrors a focus on quality of life that geriatricians have had for years, she says. But in her field and across the health industry as a whole, there’s still a long way to go before the AGS definition of person-centered care is a reality in patients’ experience of care.
“I think it’s aspirational for the health system,” Saliba says.
While the system is working on change, there are things that individuals can do move their own care in a more person-centered direction, both Saliba and Hayes-Reams say. Here are their tips for you to use with your health care providers:
1) Don’t settle for a one-sided conversation with your doctor.
“Screening, prevention, diagnosis and treatment approaches should all be premised on what a person’s preferences, priorities and goals are,” Saliba says. In her own practice, she asks her staff not to order a test unless they’ve asked first if the patient wants to go where the results might lead, whether it’s more testing or a treatment regimen. Listen to hear if your health care providers are having those kinds of opt-in or opt-out conversations with you. If they’re not and if you have the opportunity to change providers, do so, Saliba says. “At a minimum, do they talk with you about the risks and benefits of tests and treatments? Do they give you choices?” she asks.
2) Understand the big picture of your own health and functioning.
You need to know this to have a foundation on which to base your goals and priorities. The big picture is more than your list of diagnoses or medications, Saliba says. Think about your ability to move and function: How easy is it for you to stoop, kneel, bend to pick things up or lift your arms above your shoulders? Do you have trouble walking, balancing or doing daily tasks like showering? Saliba helped develop a tool for thinking about functional health. The name, VES-13, which stands for the 13-item Vulnerable Elders Survey, makes it sound like something that’s just for the frail elderly, but it can help anyone assess their own functioning, Saliba says. You can download the VES-13 here.
3) Prepare for appointments by thinking about your health goals and questions ahead of time.
It’s common to feel a little rushed in appointments. The best way around it is to plan and write a few notes for yourself in advance, say both Hayes-Reams and Saliba.
4) Be ready for, and not frustrated by, dialogue.
If you’re that patient who wants to avoid medications, Hayes-Reams points out that it’s a process of talking through the pros and cons of new medications. With existing prescriptions, it usually means discussing what to try decreasing and winnowing out first.
Saliba says there are other facets of communication that take patience, too. “Don’t see an interruption as a lack of interest” in your priorities, she says. Often it’s a sign of the opposite, an effort by providers to make sure they’re “getting” what you’re saying. Likewise, don’t be frustrated if a doctor or nurse asks something you’ve already explained to another provider. It might be in your medical record, but a provider might ask the question anyway as “a way of opening up a topic and then moving into more detail,” Saliba says. “And sometimes patients’ answers change from provider to provider.”
The whole process of care is based on dialogue, Saliba adds. When a patient tells her about a personal goal or priority, she’ll ask, “To what extent do you think you’re achieving that now?” and “If that need is not being met now, what are the barriers?” She is trying to uncover “mismatches” between a person’s goals and present reality, Saliba explains, to figure out what kind of intervention she should suggest.
5) Ask providers to document your goals and preferences when necessary.
You can ask to have your priorities, preferences and goals added to your medical record, if that’s not already happening. Hayes-Reams says: “That’s the patient’s medical record,” not just the health system’s. Getting what matters to you into the record might make it easier in future appointments or with other providers to bring the focus back to those goals.
6) Ask if providers are talking with each other.
If providers aren’t making well-coordinated efforts, it’s cumbersome for patients to navigate the health system, Hayes-Reams acknowledges. Her advice: “You really have to own your care.” Ask providers if they’re talking with each other and ask them to do so if they’re not. If you’ve requested that a provider share information with others, follow up to make sure that it happened. It’s work, but until health systems can more widely adopt the use of care navigators, Hayes-Reams says, there is no “magic answer” to the challenge of care coordination on the individual patient level.
7) Find a care partner.
In light of the effort it takes to steer your care in the direction you’d like it to go, enlist help. For frail elderly, it’s especially important to have an adult child or someone else come along to appointments to help by taking notes or asking questions, Hayes-Reams says. But that kind of help is something anyone can benefit from. Ask yourself, she says, who can “be your advocate and your other set of ears.”
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