The Journey from Palliative Care to Complex CareJuly 20, 2018 | By Lauran Hardin
Several years ago I received a phone call from my manager asking me to take on a complex patient. At that point in my career, I had been the program manager for a large palliative care service for the better part of a decade and was used to handling patients with complicated medical challenges.
My manager felt that my palliative care skills would prove to be helpful with this referral; although I had experience with the most difficult clinical situations, this patient’s care challenged me the most. While the patient did not have life-threatening illness, his quality of life was severely compromised due to chronic pain, migraine headaches, and seizures. After reviewing his records, my suspicion was that the symptoms were not a result of a seizure disorder, which he was being treated for—instead, they were psychogenic in origin.
How Core Palliative Care Skills Proved Helpful
This patient’s health care utilization was high—records showed that he had been visiting a hospital clinic five days per week, each time receiving an infusion of seizure medications, and opioids for pain. Costs were escalating. Complicating management were the patient’s complex behaviors stemming from mental illness. He had access to three different neurologists (from different health care systems) and at least four agencies providing in-home and outpatient services. He had sought help from each clinician separately without telling the others, leading to undesirable drug combinations and interactions. Because the three systems did not share an electronic health record (EHR) and because the patient did not report the different visits, the physicians were unaware of each other and the potential harms of uncoordinated care.
My manager hoped that I could coordinate with all the clinicians, providing the patient with consistent care, continuity, and as a result, lower utilization. To me, this patient represented a new definition of the word ‘complex’; the coexistence of medical, psychological, social, and economic challenges, all acting together, dependent on a fragmented health care system not designed to recognize, much less address such challenges.
"Though this was new territory for me, I was prepared for complex care thanks to my core practice in palliative care."
While I did not know it at first, my work with this patient would take me from my work as a palliative care practitioner to the emerging field called ‘complex care’. Though this was new territory for me, I was prepared for complex care thanks to my core practice in palliative care. It made sense—all of my previous experience created a seamless bridge when working with this population.
Understanding the Patient’s Story: Comprehensive Record Review
Understanding a patient’s back story is a key component of palliative care; this is also true for complex care cases. In this patient’s case, his frantic efforts to receive care from multiple sources created chaos and confusion and real risk of harm.
"Understanding a patient’s back story is a key component of palliative care; this is also true for complex care cases."
My evaluation of the records from multiple health systems revealed fragmentation in the clinical story, loss of key diagnostic information, and lack of attention to emotional and behavioral health in the treatment plan. In spite of competent physician care, the walls between our organizations, and between the medical and behavioral health information, had created a tangle of misunderstanding among providers. The lack of a cross-continuum entity responsible for communication, coordination, and a shared plan of care across settings had further exacerbated the patient’s situation.
Putting the Patient First: Untangling Care with a Palliative Care Approach
Facilitating conferences and interdisciplinary team communication is a familiar practice in palliative care, but this complex case extended the boundaries of that skill. Here, the definition of “team” expanded to include multiple agencies across the spectrum of care delivery, including organizational competitors. The skill of supporting patients and families in decision making translated to supporting the various care delivery teams; all were navigating the confusion about who was responsible and in charge, which resulted in conflict. Transitioning this behavior to reach consensus on an integrated coherent, and communicated plan of care was essential to improve outcomes. I hadn’t previously participated in an effort like this as a palliative care clinician, but my training and experience made it possible.
"Facilitating conferences and interdisciplinary team communication is a familiar practice in palliative care, but this complex case extended the boundaries of that skill."
While symptom management is a core competency of palliative care, this case required that we look for new ways to relieve suffering. Instead of continuing with the medication, the patient needed to be transitioned off seizure medications and opioids. Behavioral health management was added to the patient’s care plan to help recognize the past traumas influencing his symptoms and help-seeking behaviors, offering alternative approaches to address them.
Relief of suffering also meant attending to the stress on the multiple health care teams. Previously, clinicians had been operating in silos, reinventing the wheel each time they saw the patient, and slowly building resentment toward each other and the patient. To address this, I convened a conference of the internal team of clinicians at my organization and included an external team of representatives from the other health systems involved in his care. These two groups continued to meet by phone to process and understand the sequence of the complex behaviors which had occurred due to the patient’s previously unrecognized (and untreated) mental illness.
Implementing an Integrated Plan of Care
Over time, the team was able to create an integrated plan starting with the patient as a person. We approached his care knowing that he struggled with mental illness, and that his treatment was fragmented because systems weren’t connected, allowing frequent medical interventions.
This integrated plan started with a comprehensive meeting between all providers, across health systems, to ensure that everyone was aligned. This venue provided an opportunity for clinicians to meet each other for the first time; communicate about the patient’s history and story; and identify a shared plan of care, ultimately integrating it within the EHR of each health care system. It was also agreed that the patient’s multiple relationships across each specialty (e.g., three neurologists) would be reduced to one lead provider.
We came to the conclusion that the patient’s most trusted relationship was with his primary care physician, and he would lead the care; he’d first have a discussion with the patient, informing him of the new system implemented for his best interests, trying to help him feel understood and taken care of. This integrated plan resulted in a $1.3 million reduction in unreimbursed charges, as well as a new way of delivering care.
"My colleagues and I began to wonder how many other patients experience this kind of fragmentation in their health care, and what improvements could be made."
My colleagues and I began to wonder how many other of our patients experience this kind of fragmentation in their health care, and what improvements could be made. We started to look at system data on these high-frequency patients, and learned stories; we found an entire population of vulnerable people with both medical and behavioral health problems who had similar needs and challenges. Untreated mental illness, substance use disorder, fragile social situations, traumatic life experiences, and complex medical needs emerged. Caring for this group of patients required a new set of competencies and resources among the staff.
From Palliative Care to Complex Care
Models and approaches for working with complex health and social needs were being developed across the country. In fact, fifteen years ago Dr. Jeffrey Brenner was working with the same population in Camden, New Jersey, and found similar phenomena—high-need, high-frequency individuals bouncing between multiple health systems with a complex set of root causes which health systems were ill-equipped to identify and treat.
Through Brenner’s leadership, the Camden Coalition of Healthcare Providers was established in 2002; a community collaborative of once-competing institutions, working together to influence improvements in care for these vulnerable patients. Its goals are to understand the “complex” population; create an intervention model based on building authentic healing relationships, where patients are active participants in their health care, feel heard in a secure, genuine, and continuous relationship with the provider; integrate behavioral health and social services into the care plan; and investigate process improvements such as aligning systems to prevent treatment fragmentation.
The success of Brenner’s work led to founding the National Center for Complex Health and Social Needs in 2016. Serving as a central hub for diverse programs around the country, the National Center works to build capacity for providing better care at lower cost to people with complex medical, psychiatric, and social needs on a national scale. With an annual national conference, webinars, and a teaching and training site, new materials are available to help palliative care providers and other clinicians who focus specifically on complex populations.
In Conclusion: Shifting Focus
I never imagined that this phone call several years ago would lead me to shift my focus from working in palliative care, to working in complex care. I joined the National Center as faculty two years ago, and have found that my training and experience in palliative care delivery have provided me with an ideal foundation to understand and address the needs of the most vulnerable and complicated patients in our health care system.
"As the field of complex care develops, we can look to the principles of palliative care as a best practice, beginning with understanding the patient as a person.”"
As the field of complex care develops, we can look to the principles of palliative care as a best practice, beginning with understanding the patient as a person; providing comprehensive assessment in all domains of health and well-being; working with an interdisciplinary team; and ensuring coordinated and well communicated care across settings and over time. Our mission and work to apply these skills in new directions holds great promise for changing how care is delivered for the better. I hope you’ll join the movement to make complex care the standard of care for individuals with complex health and social needs nationwide.
Lauran Hardin, MSN, RN-BC, CNL
Director Cross Continuum Transformation
National Center for Complex Health and Social Needs