Building Real Circles of Care for Complex Patients at Home

Doctors, nurses, and medical specialists. Pharmacists. Paid caregivers and loving family members. These people are critical to the wellbeing of complex-needs patients. Together, they form circles of care.

Now, more than ever, we’re aware of the importance of relationships in medical treatment and caregiving. These connections provide more than compassion and support. Strengthening them leads to better coordination and more responsive care.

Each link in a circle of care is significant. For those with complex needs, being surrounded by the right people is critical. But to provide full support, the right people need to be connected – and connected in the right way.

Connectedness is absolutely crucial when a patient lives at home. This post will explore one of the most important – and challenging – aspects of treating complex patients: strengthening circles of care.

Care providers in circles of care

The number of Canadians with complex and chronic illnesses is growing. Increasingly, patients are receiving medical treatment from many care practitioners.

Now, more than ever, medical and caregiving professionals need to coordinate their actions. They need to share information efficiently – amongst each other, and with patients and their family members. This is how strong, supportive circles of care are built.

Consider the example of a man with diabetes and chronic obstructive pulmonary disease (COPD). Let’s say he was discharged after a COPD-related hospitalization. His circle of care will likely include many health care providers.

There’s his primary care physician, who referred him to a respirologist. Since his hospitalization, he’s also also worked with a pulmonary rehabilitation specialist.

As part of his rehab, the patient works with a respiratory therapist, an occupational therapist, and a dietician. Nurses help him manage his condition at home. A pharmacist helps with medication.

Communication issues could arise between any two links in this circle of care. And the consequences could be very serious.

Of course, the patient’s diabetes adds a whole other level of complexity.

How will the medications he’s taking for the two diseases interact? Could his rehabilitation exercises damage his feet? Are diabetes-related concerns receiving enough consideration?

For professionals working across disciplines and environments, communication is key. Care plans need to be kept up-to-date and accessible to the right people. Those who work with patients and their family members need to encourage understanding and participation.

We can achieve these goals through initiatives that highlight collaboration. Government support, technology, and practitioner attitude shifts all play a role. We’ll say more about solutions later in this post.

For care providers and medical practitioners, maintaining strong circles of care is a monumental challenge. But for patients, it’s worth it.

Family Members

For a person with complex care needs, family members can be pillars of strength.

Supportive families solidify circles of care. They give patients much-needed emotional support and encouragement. In many cases, family members even act as primary caregivers.

Of course, providing care for those with complex care needs is challenging. For those who don’t have relevant training, it’s a struggle.

Fortunately, governments are beginning to recognize family contributions. Ontario’s health ministry recently announced $20 million dollars for respite care.

Full-time family members can help keep circles of care strong. But it’s important to note that there are many ways of caring.

Consider the son who acts as substitute decision maker, and visits whenever he can. Think of the sister who provides long-distance financial support, and calls to check in frequently. These people may be indispensable members of their loved ones’ circles of care.

It’s also true that not all complex patients require help 24/7. Let’s revisit our patient with COPD and diabetes.

He’s relatively independent. But he has a caring sister, and she’s his biggest source of support.

She attends the supervised exercise sessions he takes as part of his respiratory rehabilitation. She encourages him to perform exercise at home, recalling any instructions he might have forgotten.

She even helps him manage his medications and watches for potential drug side effects. When he feels like smoking, she calls to calm him down. She sometimes administers his oxygen therapy.

If those involved in the patient’s care don’t keep his sister informed, she can’t help. Practitioners need to make sure relevant information is accessible and easy for a person without medical training to understand.

Trusted family members shouldn’t have to fight for a place in their loved one’s circle of care.

The Patient

On the whole, patients are more empowered than ever before. Medical professionals and care providers are encouraging informed choices and self-care activities.

Of course, not all complex-care patients are capable of making personal medical decisions. But most are. And these individuals should be able to understand their conditions and treatment options.

Having the right information also put patients in a better poison to manage their conditions. Health care professionals have long prescribed lifestyle changes such as exercise and dietary recommendations. But modern practitioners are looking to educate and further engage patients.

From goal setting to personal medical monitoring, many people with complex-care needs making significant changes for their health.

It goes without saying that relationships with other circle of care members are also crucial. When family members are involved, they should understand and respect their loved one’s point of view.

Across circles of care, communication is crucial. Typically, many people are involved in the care of a complex patient. It’s important that the care recipient’s voice is never drowned out. After all, nobody else can feel the patient’s pain, discomfort, and mental distress.

Once more, consider our patient with complex COPD and diabetes. Here’s what will happen if he’s well supported by his circle of care.

Every specialist involved in his care educates him about his co-morbid conditions. They explain the purposes of his recommended lifestyle choices, highlighting the good they can do. His pharmacist answers his medication-related questions.

From oxygen therapy to unsupervised rehab exercises, the patient takes an active interest in his own care. He sees improvement and begins to set personal health goals. His family members reinforce these positive choices.

Everyone involved in the patient’s care is on the same page, and they’re speaking the same language. He feels a greater sense of control – and satisfaction.

Solutions for the entire circle

The importance of strong circles of care can’t be overstated. But staying in the loop can be challenging for everyone – especially when it comes to complex patients.

Fortunately, popular models of care and new technologies can help.

Initiatives across Canada are starting to highlight the importance of collaboration. As one example, Ontario’s Health Links focus on coordinated care planning for those with high needs. Patient goals and input are central to this process.

However a provider delivers care, there are almost certainly ways that technology can improve the process. The right tools can provide real solutions, eliminating reservations and skepticism.

Can care practitioners who work in different locations and areas of specialization really collaborate? How can they ensure communication gaps don’t occur?

What about dealing with patients and family members? Is there a way to improve the reliability of self care and reporting?

How can practitioners communicate with patients and their families on an ongoing basis, and in a way that’s easily understandable?

How can patients, even those who aren’t technologically savvy, connect with circle of care members regularly?

The technology is here, and the potential is limitless. Savvy care providers are using digital tools to share real-time information within circles of care. They’re providing patients with easy and intuitive ways to reach out.

There are even technologies that monitor indicators of patient health – such as heart rate or blood sugar – and deliver it results instantly to practitioners.

This may sound like the stuff of science fiction, but it’s not.

The future of complex care is collaborative, carefully coordinated, and digital. Remember that as we shift toward more connected circles of care, we shift toward better outcomes for patients.

Feature image courtesy of Christian Gonzalez

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COPD Education – Onboarding

Objective

To complete a thorough needs assessment / initial evaluation for a COPD patient of an outpatient clinic

Actors
Patient, Educator (Nurse, RT, the Physician could also be the educator)

Timelines
One 60-90 min session with the Educator

Description
  • This protocol should be established for all COPD patients from a given clinic, independently of whether they are new patients or they are known to the clinic. This protocol is the basis to engage the patient into other protocols such as education, exacerbation follow-up, etc.
  • We need to identify patient goals/concerns to guide the interventions
  • A thorough evaluation is carried on, with the objective of understanding where the patient is on their disease journey and follow-up treatable traits: dyspnea, exacerbation or dyspnea and exacerbation.
  • It includes the use of objective questionnaires such as the mMRC, CAT, HADS, Frailty Scale, etc.
  • Identify if the patient needs to be referred to other resources (e.g. Physiotherapist, social worker, occupational therapist)
  • Once Onboarding is completed, the patient continues to the COPD Education workflow
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COPD Education – Continuous Maintenance

Objective 

To cover in depth all the necessary elements of self-management education as per the LWWCOPD, with priorities based on patient goals and identified treatable traits

Actors
Patient, Educator (Nurse, RT or Physician)

Timelines
A number of “Core” educational modules have been identified which cover the basic COPD education from the LWWCOPD program. Additionally, optional modules can be used to respond to patient needs. The timeline (frequency, number of modules to be covered at a given education session) is fully customizable, although we recommend to have education sessions every 2-weeks during the “active” phase of education. Once this is completed, the patient continues to the Maintenance Mode (see below).

Description
  • Launched at the onboarding protocol
  • Provide basic overview of COPD self-management based on LWWCOPD (medication adherence, inhaler techniques, PLB technique & energy conservation) up to the development of an Action plan for early exacerbation recognition and management.
  • Prioritize self-learning by the patient (e.g. watching videos, reading educational materials, completing homework) in addition to live sessions with the Educator. Educational materials are sent to the patient directly via the platform, and become the patient’s own library. The Educator can customize which “homework” the patient receives.
  • Educators have access to “User guides” to standardise their educational intervention. These user guides include: objectives, interventions, suggested questions, evaluation of self-efficacy, and learning contracts for each module.
  • Once the core education is completed, the patient can continue to the Respiratory Status Follow-up Workflow (run in parallel)

The Maintenance Mode
  • As soon as the maintenance mode is engaged, the frequency of visits Educator/Patient is reduced to once every 6 months.
  • During the Maintenance Mode sessions, the educator has access to all the education modules and can choose any piece of content that needs to covered with the patient. 
  • A streamlined evaluation (similar to the initial eval.) is done during each “maintenance” visit to identify any substantial changes on the patient’s needs that will require some adjustment. The patient could come back to an “active” education mode (more frequent education sessions, e.g. every 2 weeks).
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COPD Respiratory Status Follow-up

Objective

Monitoring of stable patients from a clinic in order to identify early any aggravation of symptoms (exacerbation) and implement an action plan

Actors
Patient, Educator (Nurse, RT or Physician)

Timelines
Scheduled regular automated follow-up to the patient symptoms. Intensity/Frequency can be adjusted by the Educator depending on patient needs (e.g. daily, every week, etc.). Ongoing through the year.

Description
  • Launch: Patients who have completed the Core Educational including setting-up an action plan.
  • Regular automated questions allow to identify any change in patient’s symptoms and severity.
  • If an exacerbation is detected the patient gets a reminder to engage their self-management strategies while waiting for the Educator to call back.
  • An alarm is generated for the Educator, so they immediately call back the patient. At this call they will evaluate any further intervention required and schedule additional follow-up.
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