What typically happens when a clinician meets a patient with complex care needs? Try to picture it.
Let’s consider an example. Ava (not her real name) is in her 60s. She’s been diagnosed with heart failure, hypertension, and a substance use disorder. She lives on her own and she’s lonely. According to her record, she’s been offered support resources in the past, but it doesn’t appear that she’s made a meaningful connection anywhere.
As a clinician, you might say something like, “You need to weigh yourself every morning. And you need to eat healthier foods. Watch your sodium intake.” You provide a long list of things Ava should and shouldn’t do.
While you’re talking to Ava, however, she’s thinking, “I have trouble just getting up in the morning. I don’t have anyone to help me. I eat what food I can get my hands on. I have a hard time getting around my house.”
You aren’t wrong to provide Ava with a list of dos and don’ts. It’s just difficult for her to focus on your advice when there are so many other things running through her mind: “What happens if I can’t get up by myself? Will I be able to go to the bathroom? Can I get up and feed myself? If something bad happens to me, who’s going to help me?” When you look at the situation from the patient’s perspective, is it any wonder that nothing has changed when Ava comes back for her next checkup?
There’s been more discussion in health care recently about co-design, but what does it really mean?
To me, co-design means identifying end customers of a process and working with them to understand how to make that process work. Customers could be physicians and nurses, but they can also be the people who will be our patients.
Through co-design, we’re more likely to end up with effective solutions. For example, we could sit in a room somewhere and decide how clinicians are going to implement a new checklist. But, if you don’t co-design with the clinicians meant to use the checklist, you won’t learn until after you roll it out that they had challenges using it. If you had taken the time to run tests with them, clinicians might have told you that using the checklist interrupts their workflow or that it’s redundant. Instead, the checklist fails, and the clinicians get labelled “resistant to change.”
The same thing happens with patients. How many times have we created a form, instructions, or a process without patients? How often do we complain about “no-shows” without considering, for example, that most of our patients have a hard time getting time away from work to come to appointments or because there’s no bus service in their area.
When we don’t co-design with patients, we shouldn’t be surprised by failure. We end up squandering time, will, and resources we can’t afford to waste, and we all end up frustrated.
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Tips for Co-Designing Complex Care Management
People with complex care needs may be a small percentage of the overall population, but they’re the patients many of us see most often in our care settings. Their situations are complicated because they have multidimensional social, behavioral, clinical, and functional needs. Assuming they have reliable access to ongoing care — which, let’s remember, is not always the case — most health care is not designed to meet their needs.
Making health care more supportive of people with complex care needs does not have to be complicated. Here are some tips for how to get started:
- Ask “What Matters” and Listen — If you’re a clinician, ask the next patient you see, “What’s important to you? In your care, what makes sense to you? What doesn’t?” Do a lot of listening and see how that changes the care plan.
- Design Care Plans from the Patient Perspective — Going back to Ava’s situation, for example, finding out what matters to her would lead to co-designing how to address her fear about not being able to get out of bed. In addition to helping Ava understand the benefits of taking her medications, you might schedule a safety check in her home. She might need assistive equipment. You could help her think about how to get psychosocial support.
- Start testing — Again, start with one patient. Can you learn what matters to your next patient? Can you co-design care that helps her attain the goals that mean the most to her? If you find out, for example, that a patient wants to see his daughter graduate from high school in three years, you can work with him to identify his intrinsic motivations to take his medications, manage his diet, and exercise differently.
Treating Patients as Individuals
To provide successful complex care, it is essential to have systems and processes that adapt care for individuals. No one person can meet the needs of everyone in a customized way, but there are good examples of systems that free up clinicians to listen and co-design with patients. For example, while IHI worked on the Blueprint for Complex Care, we learned how Stanford Coordinated Care builds in time and space to develop relationships with their patients.
If I came into the clinic, for example, and said, “I don’t really know how to take my medicines,” [the team] would help me understand why each medication is prescribed, identify cues to remember how and when to take each one, and develop the confidence to manage my care at home. They’ve trained their medical assistants to be panel managers and created an efficient and yet personalized system of care. IHI interviewed one of the panel managers who said, “We’ve built a system where people are seen as individuals, and we should do this everywhere.”
Cory Sevin, RN, MSN, is an IHI Senior Director. She will be faculty for QC1: Designing with Intent for a Population with Complex Medical, Behavioral, and Social Needs at the 2019 IHI Summit on Improving Patient Care (April 11–13, 2019 in San Francisco, CA, USA).
You may also be interested in:
Blueprint for Complex Care: Advancing the Field of Care for Individuals with Complex Health