"Re-systematizing" Healthcare: The Role of Essential Care Partners

Our healthcare system seems less and less like a system everyday. For years now solutions in the form of new policies, governance structures, and clinical models (and occasionally some money), have been grafted on to address the needs of a changing, and increasingly ailing system. Primary care is in crisis across the country. In Ontario 2.5 million people are without a primary care provider, a number set to double in the next few years. Our hospitals are trying to step up, but patient volumes are overwhelming their ability to deliver timely services, a fact compounded by aging infrastructure, burnt-out clinical teams, and funding which is long overdue for re-baselining to address scope creep. Our children are waiting longer than adults for mental health services, and waitlists to receive a diagnosis for neurodiverse youth often push kids outside of early intervention windows. And, sadly, community care funding is often an afterthought, impacting organizations like Community Health Centers and their ability to offer competitive salaries to attract and retain staff.  

None of these reflections are new, and in fact many other very significant concerns are being raised by passionate health advocates across the province and country. There is strength in the system too, healthcare attracts incredible staff teams and leaders who are doing amazing work despite these significant challenges. To their credit, dedicated civil servants are also working tirelessly to understand and address these acute needs. Even our politicians know they have to act. While healthcare has been replaced by cost of living/ housing as the central focus of today’s political leaders, it is not for nothing that in Ontario the deputy premier is also the minister of health. As all sides of the implementation and policy teams begin to explore how to approach this incredibly complex issue I want to issue a call.  

Let’s prioritize making healthcare a ‘system’ again. Let’s be courageous, creative, and thoughtful about designing a resilient system to meet our needs: TOGETHER. The solutions of the past may no longer meet the needs of the future. Integrated care needs to be more than a buzzword, data needs to be interoperable, and governance models need to be effective, empowering, and accountable.

We have tackled bigger challenges before, and this time we have a framework that I believe can meet the moment, the Quintuple aim:

·        Improving population health (including the social determinants)

·        Enhancing patient experiences (and their caregivers!)

·        Reducing costs (Improving Value)

·        Addressing the well-being of providers (trauma-informed, psychologically safe environments)

·        Advance health equity (!!!)

We can leverage these guiding principles, but we must remember they wrap around our healthcare system and NOT around specific programs or sub-sectors. We are already in the process of popping the hood of healthcare, so let’s put a new engine in. One that is climate-friendly, A.I. integrated, and totally wired and connected to itself. (forgive the clunky metaphor!)

As I reflect on the where and how to begin the behemoth task of improving healthcare and ‘re-systematizing‘ I look to where the component parts are already most interconnected: Patients and Caregivers.

Healthcare has changed overtime, and perhaps some of the most important changes are that the knowledge of the healthcare teams has improved, and their tools have become more sophisticated. This is true for the physicians, nurses, and other allied health professionals. It is also true of those often overlooked team members – patients and caregivers. With access to new knowledge, trainings, and computing skills, I want to dedicate the rest of this article/reflection on the importance of designing our systems to include Essential Care Partners  and the influence they have on our care system. In the coming weeks I will address some other areas of opportunity to design a health system fit to purpose for 2024 and beyond.

The Importance of Essential Care Partners

Studies estimate that caregivers provide 75% of the care in the healthcare system. As Canadians we expect our government to cover our medically necessary care. This is only possible because two thirds of the care in the system never gets billed! Across the country homecare is unable to meet the needs of its patients, relying on caregivers to perform roles otherwise undertaken by clinical professionals. These parents, spouses, siblings, and friends do this work because of an abundance of love, but mostly out of a scarcity of resources in the system.

Caregivers are doing so much more than simply the physical, emotional, and sometimes spiritual acts of caring. Caregivers often act as a bridge between patients and healthcare providers, especially since our system is rarely adequately integrated to talk within itself. Since EMRs often can’t connect between specialist care or even across hospitals, caregivers are key to continuity of care, often the central reservoir of patient history. Caregivers prevent medication errors and flag concerns often acting as the main communication conduit for the patient. They are also generally responsible for implementing and managing care plans and medication compliance reducing health system visits. While we have the tools and capabilities to improve communication across systems, the burden of an integrated and functioning healthcare system continues to lie with our unpaid caregivers.

Support for Caregivers

The well-being of caregivers is also linked to the well-being of the patients for whom they care. While caregivers build up our health system, they are also users of it themselves. As with any care team members, we need to ensure they receive the proper training and supports so they don’t burn out and require care themselves. This happens when we first identify them as true members of the team, never as a burden, as a colleague – not an adversary.

Key Statistics Highlighting the Impact of Caregivers

• There are approximately 4 million caregivers in Ontario, providing an estimated 75% of the care in the healthcare system.
• 67% of caregivers are employed, balancing work and caregiving responsibilities.
• Distressed caregivers spend on average 39 hours a week providing care!
• 51% of caregivers are caring for their own parents or in-laws while also raising children under 18.
• 46% of care recipients are 75 years or older, indicating the significant role caregivers play in supporting older adults.
• Only 29% of caregivers reported being asked what they needed to best care for the recipient, indicating a gap in caregiver inclusion and support.

Implementing Essential Care Partner Programs

Caregivers are our allies in the effort to build a high-performing integrated health system. By making the invisible visible I hope we can begin to understand how the healthcare system is reliant on these partners, and that they are up to the challenge - provided the right supports. We have a roadmap to leverage the strengths of this critical workforce: Essential Care Partner Programs.

Three simple principles in an ECP program:

Identify

Formally identifying caregivers at points of care such as intake or assessment. Our healthcare system should explicitly recognize caregivers as part of the care team, leveraging their insights and support to improve patient care. This approach ensures that caregivers are included in care planning and decision-making processes.

Include

Including caregivers as true partners on the patient care team. Developing organizational/ system level policies that recognize and include caregivers as essential care partners that facilitate clear communication between all parties involved. Additionally, establishing mutual expectations and responsibilities among caregivers, patients, and healthcare providers to enhance collaboration and care quality. Digital tools and platforms can provide caregivers with access to information, resources, and support services. Leveraging these principles create a stronger care team and better patient outcomes.

Support

Equipping healthcare staff with the knowledge and skills to recognize and support caregivers. Training programs should focus on the importance of caregivers, the challenges they face, and the best practices for engaging them effectively. Creating trusting, trauma informed, and psychologically safe environments for all, especially between caregivers and healthcare providers. Providing caregivers with access to resources and support systems for their own well-being to ensure they receive the help they need to continue their crucial roles effectively.

Conclusion

As we ‘re-systematize’ healthcare, it is important we look at the big picture and identify the nodes and hubs creating a connected system. To Improve a system, they say we should connect it to more of itself. In our current health eco-system, caregivers are the connective tissue between providers, organizations, and patients. The inclusion of caregivers as Essential Care Partners is a critical step towards achieving the quintuple aim in healthcare and creating a resilient system. By recognizing the invaluable role caregivers play, improving communication, providing support, and implementing inclusive policies, we can build a more resilient, efficient, and compassionate healthcare system.

As we continue to innovate and reform healthcare, let's ensure that caregiver inclusion becomes a central practice, enhancing the well-being of patients, caregivers, and even healthcare providers.

#HealthcareInnovation #Caregivers #QuintupleAim #PatientCare #HealthEquity #HealthcareSystem #Healthcareleadership