Right Patient, Right Place, Right Time: The Wicked Problem of Optimizing Referral to Advanced Heart Failure Centers

We have seen a remarkable expansion in therapeutics for heart failure (HF), especially for patients with reduced left ventricular ejection fraction (HFrEF) and severe HF. While a triumph of medicine, the associated treatment complexity is not. High-quality care for HF involves considering rare etiologies, intensifying a half-dozen guideline-directed medical therapies, suppressing a host of arrhythmias, achieving resynchronization, addressing secondary valvular disease, interpreting genetic panels, and more.¹ The most aggressive treatment options for advanced HF—cardiac transplantation and durable left ventricular assist devices (LVAD)—further magnify the risks, burdens, costs, and need for patient and family caregiver engagement.² Managing the totality of these options requires teams of subspecialty clinicians embedded in comprehensive medical centers. As a result, the United States has only 125 heart transplant centers and 175 durable LVAD centers that are concentrated in mostly urban areas. With the diffuse prevalence of HF and its general progression over time, HF care requires a coordinated confluence of local care and targeted referral.

Getting sick patients with advanced HF to centers of excellence may sound like an automatic step in their care. But the reality is that it is not.³ Prognostic uncertainty for individual patients is dismaying.⁴ Patients often tune up with hospitalizations … until they don’t. Distances vary: in the Mountain West, it is not uncommon for patients to drive more than 400 miles to reach an advanced HF center. Travel challenges are amplified within metropolitan centers: “I don’t drive in the big city” is a reality, and parking remains a primary complaint at many large hospitals. The rural-urban divide, racial injustices, and proliferation of polarized social media has amplified cultural differences and political overlays: frank mistrust in the medical establishment is growing. Referral adds “more cooks to the kitchen”, where referral can confuse already complicated care for patients with HF, of whom the majority suffer from multiple chronic conditions and already have multiple local health care providers. Access to medical records across health systems is far from seamless, such that moving to a new hospital can lead to critical loss of medical and personal knowledge. And second opinions are not always welcome: “You steal our patients” is a feared response among the referral-based advanced HF community when improvement with ongoing medical care, or merely getting lucky, leads a patient to continue their care at the advanced HF center. Exactly how much these factors conspire to prevent or delay appropriate referral to advanced HF centers is unknown, but estimates are that less than half of patients who may benefit from an advanced HF center ever make it there.^5,6 Worse, these missed opportunities are concentrated among the most vulnerable patients with unfavorable social determinants of health.⁷

The consequences of delayed or missed referral are often the difference between life and death. Although the clinical trajectory of HF can be undulating and uncertain, often there is a window of opportunity to consider advanced therapies. Too soon, and the referral may seem inappropriate and burdensome to patients, while wasting high-end resources and limiting subspecialty access for those most in need. Too late and irreversible end-organ damage may set in, or patients simply die in the community. When advanced HF clinicians are queried about what they wish were better about systems of care, one of the most frequent answers is “timely referral”. As an advanced HF clinician, frustration abounds when initiating a transplant evaluation on a patient with worsening HFrEF, hypotension, and cardiorenal syndrome who has spent the last 5 years ‘stable’ on moderate doses of carvedilol, lisinopril, and furosemide; or accepting a hospital transfer of an inotrope-dependent patient who has gone into multiorgan failure while languishing for weeks in an outlying intensive care unit.

“Wicked problem” thinking helps better understand the challenges and solutions to optimal referral. As initially described, a wicked problem is “that class of social system problems which are ill-formulated, where the information is confusing, where there are many clients and decision makers with conflicting values, and where the ramifications in the whole system are thoroughly confusing.”⁸ Optimal care of advanced HF fits nicely into this construct: exact treatment algorithms for these diverse patients with prognostic uncertainty remain elusive;¹ large teams of people are required to care for these patients and their families; the resources required are daunting, with total costs of pursuing LVAD implantation exceeding $473,000 in the first 2 years;⁹ and chronic HF is often interrelated with multi-morbidity, advanced age, substance abuse, and suboptimal self-care. Wicked problem thinking states that ‘solutions’ should be tractable ways to improve a situation rather than an attempt to solve it, with a deep respect for the possibility of unintended consequences.⁸ Others have added that stakeholders engaged in wicked problems tend to have radically different world views and different frames for understanding the problem.¹⁰ As such, approaches that build perspective and promote collaboration tend to be best at addressing wicked problems.

Within this current state of affairs, Drs. Morris, Khazanie, Drazner, and other Advanced HF experts tackle the wicked problem of HF referral in an innovative and thoughtfully constructed AHA Scientific Statement entitled “Guidance for Timely and Appropriate Referral of Patients with Advanced Heart Failure”.¹¹ They break down the complex process of referral into 2 main steps: 1) recognizing the clinical clues associated with progression to advanced HF, and 2) assessing potential benefits of referral to an advanced HF center. They outline what is “behind the curtain”, so that community-based teams and patients can understand what referral entails. They recognize the importance of shared-decision making between the referring team and patients and their families. They call for acknowledgement of implicit biases that may create inequitable thresholds for transfer. They advocate for systematic screening, as some centers are now piloting.¹² And they appreciate the opportunity for increased uptake of telemedicine to facilitate collaboration between community-based teams and advanced HF centers.

But optimal referral is a wicked problem, which will take more than improved risk models and advertising what advanced HF centers can offer. The real solutions to prognostic uncertainty around transition to end-stage disease are unlikely to come from clinician education, biomarkers, or machine learning; rather, we need greater reverence for the inherent unpredictability of the future, with humility in the community that our beloved high-risk patients at some point may be better off with a specialized team, and appreciation in academic centers that local relationships are critical to great care. As Francis Peabody famously said: “The secret in caring for the patient is to care for the patient.”¹³ Patients and their existing healthcare providers cannot see referral as a sign of failure, but rather a sign of natural disease progression.

We also need a health system that makes it easier to do the right thing, where payment rewards collaboration and patient-centered care. In the current fee-for-service system, one of the most lucrative activities a cardiologist can do is bill 35 minutes of critical care services for “Creatinine increased this morning following dobutamine wean yesterday. Dobutamine dose increased back to 5 mcg/kg/min. Will attempt to wean again tomorrow” (Current Procedural Terminology code 99291). To counter such unintended consequences of fee-for-service payment, Medicare has implemented outcomes measures designed to grade and reward hospitals for their performance. This includes attribution of deaths to the admitting hospital, theoretically encouraging transfer when patients are more likely to survive at a specialized center. However, quality measures have their own limitations, and have been questioned by the same advanced HF leadership who would advocate for early referral.¹⁴

Patient engagement offers another way to do better with HF referral. No one has more skin-in-the-game than the patients and their families facing life-threatening disease. But we have not done enough to help them anticipate progression of disease, to prepare them for the possibility of additional specialty attention, and to proactively bring them into the medical decision-making process. The proliferation of nutraceuticals and low-quality medical information on social media reflects patient desire to have control in their care and a reaction to their inability to be fully participating members of their care teams. We need to foster a culture in chronic disease management where patients are primed to participate in clinic encounters and their energy is leveraged to overcome the clinical inertia that prevents evidence-based treatment intensification and timely referral.¹⁵

HF is everywhere and it usually progresses. Effective but complex therapies exist. Too few patients get subspecialty care. The consequences of missed care are deadly. Thus, all clinicians need a framework for recognizing progressing to advanced disease, and then help with timely referral to centers that offer a higher-level of evaluation and management. Unfortunately, the difference between the ideal triage of these patients and the reality of referral patterns is a wicked problem arising from patient, clinician, and systems issues. Thankfully the new AHA Scientific Statement on Timely and Appropriate Referral of Patients with Advanced Heart Failure provides some wicked-good guidance on how we should rethink this problem. But real progress will not occur until the insidious and wicked misalignment of financial incentives, siloed care design, and paternalistic approach to HF care also change.