March 6th, 2012
Shared Decision Making in Advanced Heart Failure
Larry Allen, MD, MHS
Larry Allen is the lead author and co-chair of the AHA Scientific Statement on Decision Making in Advanced Heart Failure.
Patient-centered care ensures that clinical decisions are guided by an individual patient’s values, needs, and preferences; shared decision making is the act of putting this type of care into clinical practice by asking health care providers and patients to consider information together and work toward consensus. This process should focus on the outcomes that are most important to the patients, including not only survival but also relief of symptoms, quality of life, and living at home.
High-quality medical decision making for advanced heart failure is becoming particularly important but also increasingly challenging as patients are living longer with their heart disease and treatment options continue to expand– including left ventricular assist devices. Therefore, the American Heart Association has sponsored a Scientific Statement entitled “Decision Making in Advanced Heart Failure, published yesterday, that provides a roadmap for clinicians caring for these complex patients. The statement argues that for patients with advanced heart failure, the decision-making process should be proactive, anticipatory, and patient-centered. This involves talking about goals of care, expectations for the future, and the full range of treatment options, including palliative care. It also requires a team approach.
As the time required for shared decision making is difficult to fit into a regular clinic visit in the middle of a busy clinical practice, we propose an annual review to discuss prognosis, consider reasonable therapies, and clarify the patient’s values, goals and preferences. This review is in addition to, not a replacement for, additional discussions triggered by events such as hospitalizations and other changes in the patient’s health.
4 Responses to “Shared Decision Making in Advanced Heart Failure”
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Congratulations Larry on a magnificent achievement which is a major step in promoting patient-centered care for people dying from heart failure.
As a respiratory physician I don’t think, that shared decison making with need of timeconsuming discussion with patients and their families is something unique in advenced heart failure. In fact many other diagnoses have to be discussed. Yet, we physicians have to learn to elucidate patient centered outcomes in chronic incurable diseases including end stage COPD, tumors etc. However, not every single patient/family is able (health literacy) or willing to discuss, especially risk/benefit ratios are not well understood. Many patients ask for doctor’s decision.
For patients interested discussing a once-a-year timeframe will not be appropriate, for a meaningful percentage of my patients with low education levels, cognitive or cultural problems there is little guidance in the paper.
What is necessary are tools for effective delivery of information in a patient/family comprehensible format, with understood contingencies. I agree that although a general roadmap may be designed based on these initial choices, sudden change warrants “in course” revisitation(eg after episode of SCD; multiple repetitive ICD discharges; renal failure with decision for/against dialysis). A year seems arbitrary in a unpredictable, progressive disease state.
Thank you for the excellent comments.
As to the perspective provided by Dr Kardos: We completely agree that these issues are not unique to advanced heart failure; rather advanced heart failure provides a specific disease area from which to consider the process of high-quality decision making. We also agree that different patients have different preferences, not only for the therapy they receive but also for how the shared decision making process should work; the statement recommends that these discussions begin by exploring patients’ (and families’) emotional readiness and assessing preferences for how to conduct the decision making process (including deference to clinician opinion). We recommend a dual approach of 1) annual heart failure review and 2) reassessment during major milestones, which we feel work hand in hand. The final section of the statement recognizes challenges posed by low health literacy and acculturation; perhaps decision support tools and other techniques as yet to be developed will help.
As to Dr Prida’s comments: We support the development of decision tools that help convey medical information to patients; co-writers on the statement, Dr Spertus and Dr Matlock, are among a number of researchers working to develop such tools (e.g. PRISM). We agree that sudden changes warrant in-course revisitation and the statement provides a Table of Milestones that include the very examples provided by Dr Prida; we feel that revisitation following a standardized review of important medical considerations (i.e. an annual review) is much easier and more effective than if these issues are brought up for the first time in the setting of a severe acute event.
Again, thanks for the thoughtful input.
Larry