Patient Centered Heart Failure Care: It Takes a Team to Make an Early Shared Decision
Disclosure: Dr. Kiernan has nothing to disclose.
Pub Date: Monday, March 5, 2012
Author: Michael S. Kiernan, MD
Affiliation: Tufts University School of Medicine
Citation: Allen LA, Stevenson LW, Grady KL, Goldstein NE, Matlock DD, Arnold RM, Cook NR, Felker GM, Francis GS, Hauptman PJ, Havranek EP, Krumholz HM, Mancini D, Riegel B, Spertus JA; on behalf of the American Heart Association Council on Quality of Care and Outcomes Research, Council on Cardiovascular and Stroke Nursing, Council on Clinical Cardiology, Council on Cardiovascular Radiology and Intervention, and Council on Cardiovascular Surgery and Anesthesia. Decision making in advanced heart failure: a scientific statement from the American Heart Association. Circulation. 2012: published online before print March 5, 2012, 10.1161/CIR.0b013e31824f2173.
While the term ‘patient-centered care’ should be easily definable by healthcare providers, it is likely that many clinicians have little more than a vague sense of what it means to effectively deliver this type of care. Shared decision making is a skill set that is not well taught during medical training, nor is it highly valued within the existing healthcare system; yet, it is one of the 6 pillars of healthcare quality defined by the Institute of Medicine1. ‘Patient-centered care’ is care that ensures clinical decisions are guided by an individual patient’s values, needs, and preferences; and shared decision making is the act of putting this unique type of care into clinical practice2.
Aging of the population and prolongation of life in patients with heart disease has led to an increasing prevalence of heart failure. The lifetime risk of developing heart failure for adults in the United States over the age of 40 is approximately 20%3. Despite improved medical therapies, morbidity and mortality in for heart failure remains high. Fifty percent of patients with heart failure will die within five years of diagnosis4, 5, and one in five patients will be readmitted within 30 days following hospitalization. The one year mortality for patients with very advanced heart failure is as high as 75%6. Although a plethora of recent attention has been given to heart failure disease management programs, very little focus has been paid to the process of how patients actually make decisions, nor to how their providers can help to frame their choices.
In this AHA Scientific Statement, Allen and colleagues have provided timely information on the role of shared decision making in the care of the heart failure patient2. Few areas of medicine are in as much need of the shared decision making model as heart failure. The growing complexity of heart failure management is best illustrated by the establishment of heart failure as its own boarded secondary subspecialty7. The authors have not only made clear what it means to make a shared decision, but they have provided a roadmap for how clinicians, patients, and families can together make choices reflective of an individual patient’s goals, preferences, and values.
Over the last decade, there has been rapid growth in the number of non-pharmacologic interventions for patients with heart failure. Decision making regarding these interventions is complex even for patients who spend enormous time seeking out the now widely available information that is accessible to them via the internet. Patients with a complicated disease process may have difficulty assimilating the information provided by the healthcare team regarding treatment options. Ascertaining a patient’s full comprehension concerning the risks and benefits of a given procedure, understanding a patient’s expectations regarding the outcome, and appreciating his/her reasons for consenting (or not) can be a challenging and time consuming process. Furthermore, information regarding treatment options is typically sandwiched into a time-constrained clinic appointment where the clinician is focused primarily on management of the disease burden and its co-morbidities or during the urgency of an acute care hospitalization when the time for thoughtful shared decision making may have passed.
Conversations regarding outcomes and expectations should occur early and repeatedly. Allen and colleagues present the idea of the “Annual Heart Failure Review”, similar to a health-maintenance visit, where patients and clinicians meet to discuss current and potential therapies for both anticipated and unanticipated events such as worsening functional capacity2. The authors note that difficult discussions with patients regarding the possible disease trajectory (increased frequency of hospitalizations) held earlier in the disease course will facilitate difficult decision making in the future (consideration of LVAD implantation). In addition to the annual review, the authors highlight disease “milestones,” such as worsening renal function, as triggers for interim conversations regarding patient preferences, values, and goals. Having frank conversations regarding a chronic, progressive disease will ensure that patients and families are not blind-sided by unanticipated events. Planting the seed early regarding the potential future need for advanced therapies will allow time for thoughtful percolation of information. While the prospect of cardiac transplantation in a younger patient with NYHA II symptoms may come as an initial shock, hearing these words early will allow time for patients to research and discuss with loved ones whether this therapy would be right for them, should the need arise. Some unanticipated clinical events, such as myocardial infarction, do not always allow for unhurried decision making; however, whenever possible, patients should be presented with data regarding potential outcomes and options soon and often so that the message of progressive heart failure is better absorbed and understood.
There are many layers of complexity to decision making in heart failure. As Allen and colleagues discuss, therapies target different patient-centered goals. While cardiac resynchronization seeks to improve life quality and quantity8, 9, implantable cardiac defibrillators (ICDs), when implanted alone, offer only the prospect of improved survival without the promise of reduced symptoms10. Interventions such as left ventricular assist devices (LVADs) improve both quantity and quality but at the expense of trading one disease set for the burden of another6, 11, 12—namely, dependence on an a mechanical pump and all of the accompanying drawbacks. These concepts are not always intuitive, particularly to people outside of the medical profession. Equally confusing is how an individual patient should apply population based statistics derived from device-based clinical trials to his/her own care. The role of earlier implantation of heart failure devices (VAD13, CRT14) in less or asymptomatic patients, to halt disease progression, may only complicate future decision making. Additionally, newer device-based therapies continue to emerge with the addition of implantable hemodynamic monitors15-17 and percutaneous valvular therapies18, 19 among others. With these rapidly advancing technologies, the landscape of heart failure therapeutics will become increasingly complex for patients and caregivers to navigate.
The confusion regarding decision making in heart failure is not limited to patients, but resides also among clinicians. The majority of heart failure management does not occur under the auspices of heart failure specialists, but rather in the hands of primary care physicians and general cardiologists. Emerging technologies such as LVADs are frequently limited to quaternary referral centers; and thus, many generalists have only partial knowledge regarding appropriate timing, outcomes, and limitations of these therapies. Furthermore, heart failure is a disease of ebbs and flows with a high degree of clinical fluctuation within patients. There are high degrees of uncertainty regarding prognosis and predicting survival time for each individual20, and patient selection can be challenging even for clinicians who manage these patients regularly.
Thus, given the increasing complexity of patient-centered care within heart failure, shared decision making should move towards a multi-disciplinary team approach. This is a model already practiced within transplant programs. There are multiple layers of the interdisciplinary team and within the core lies the patient and his/her caregivers. Early referral to hospitals with programs specializing in the care of heart failure is essential. It seems that too frequently patients are referred too late in the course of the disease, where the time for less hurried decision making has past. In these situations, the patient may be backed into a corner deciding between death or a high risk intervention, such as an LVAD. As a community we need to have more open dialogue between advanced heart failure programs and the front line physicians regarding harbingers of disease progression and the timing of referral. It cannot be expected that generalists independently facilitate in depth conversations regarding the risks/benefits of advanced therapies, but they can lay the ground work for future, more detailed conversations. There should be co-management between heart failure programs and primary physicians. It is not the role of heart failure programs to assume complete care for the majority of chronic heart failure patients who remain in earlier stages of disease; however, the heart failure program should be involved early to assist in assessing prognosis and to lay the foundation for what may lie ahead. The day-to-day disease management of most patients will continue to be led by the primary team until the time of disease progression, when advanced therapies may be warranted. Such therapies should be implemented only if desired by the patient. Given long-standing physician-patient relationships, primary care physicians and general cardiologists will typically have a better appreciation of a patient’s preferences and values, than the heart failure team who meets a patient in isolated windows, often at the time of acute decompensation. Primary physicians may thus be better positioned to guide discussions in reference to whether a high risk procedure, such valve corrective surgery, would be in an individual patient’s best interest.
The specialized hospital-based multi-disciplinary heart failure program typically includes sub-specialized cardiologists (now best referred to as ‘advanced heart failure cardiologists’), cardiac surgeons, nurse practitioners, nurse coordinators, nutritionists, pharmacists, mental health experts, and social workers. Given time constraints on physicians, it is often the nurse coordinator and/or practitioner who spends the most time with patients and their families, describing advanced therapies, such as transplantation. Social workers, mental health experts, and clinical pharmacists, who have in-depth knowledge of this patient population, are invaluable resources for clinicians in the process of delivering patient-centered care. These experts are essential to assessing a patient’s cognition, health literacy, coping skills, psychosocial stability, and support system. This information is critical to allow successful implementation of a treatment strategy. Advanced therapies are not for all patients, and shared decision making positions patients to be comfortable with the choices they make and subsequent outcomes, given that not all outcomes are as anticipated. The team approach to shared decision making ensures that the expectations of the patients, caregivers, and the medical team are aligned.
Finally, medical society guidelines advocate for integration of palliative approaches into the care for patients with advanced heart failure21, 22, and palliative care is important to the multi-disciplinary team approach. As noted in this statement, palliative care, representing a shift of focus to quality, rather than quantity, of life, can be offered concurrently with heart failure care and is not synonymous with withdrawal of care2, 23, 24. Palliative care clinicians typically have a greater understanding of the shared decision making model and can help to ensure that treatment plans match a patient’s goals and values25. Together with the heart failure team, palliative care practitioners can help patients decide which therapies are right for them. Similar to getting heart failure teams involved earlier in the course of disease, palliative care teams should be consulted early when considering therapies such high risk surgery22, 23. Even when patients want to proceed with intervention, having thoughtful discussions exploring potential adverse outcomes and subsequent desires, should a catastrophic adverse event occur, facilitates future care and helps set reasonable expectations. Prior to committing to an invasive intervention, some centers have moved toward preemptive consultation of palliative care in all patients considering destination LVAD therapy. This model allows patients and families to explore all treatment options, including hospice, ensuring that LVAD therapy is consistent with their goals, preferences, and values.
This statement is indeed a “call to action” to heighten awareness of the importance of shared decision making in the management of this complex, diverse, and growing population. To guarantee truly thoughtful decision making, conversations regarding disease trajectory should occur early and often. To ensure that care is truly patient-centered and consistent with a patient’s beliefs, preferences, and goals, decision making should be shared between the patient and caregivers, primary care physician, palliative care services, and heart failure team.
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-- The opinions expressed in this commentary are not necessarily those of the editors or of the American Heart Association