Background: Advanced heart failure (AHF) can be a bewildering illness for patients, caregivers, and clinicians alike due to an illness trajectory that can be difficult to describe and predict. Many AHF patients are crippled with a high burden of symptomatic disease and recurrent visits to emergency departments, yet hospice is an underutilized resource in comparison to other chronic illnesses such as cancer or dementia. Considering the growing number of Americans with AHF and growing complexity in decision-making, many large medical organizations have advocated for the involvement of specialized palliative care teams to help AHF patients, families, and clinicians wade through the difficult decisions and improve symptom management. Yet, even palliative care clinicians may not know where to begin in improving the end of life care delivered to AHF patients.
2012 Consensus Statement: An American Heart Association sponsored multidisciplinary panel which included experts in cardiology, palliative medicine, and quality improvement assembled to identify best practices to optimize the shared-decision making between AHF patients and their clinicians. Palliative care clinicians should be aware of the following guiding principles from this panel:
Anticipation is a central tenet of shared-decision making. Difficult discussions conducted early in the disease trajectory will simplify difficult decisions in the future.
Clinicians should perform annual heart failure reviews. These annual reviews should include a discussion of the patient’s illness, estimated survival, and preferences for current and potential therapies. Collaboration with palliative care specialists should be considered to optimize the quality of discussions generated from these visits.
Sentinel events such as AHF hospitalizations, defibrillator shocks, kidney failure, or loss of independence should trigger a more focused discussion or “milestone review.” In this milestone review, clinicians should utilize the sentinel events as a “bridge” to either:
Many clinicians may not be fully informed about the concept of shared-decision making. The panel created a tip sheet of the “Top 10 Things” to know for optimal shared decision-making in AHF. See appendix 1.
Systems-Based Steps You Can Do at Your Own Institution:
Reach out to your cardiology/AHF clinician colleagues. Ask if they:
Are struggling with their AHF patients in terms of decision making and symptom control.
Are confused about how best to utilize palliative care and hospice services.
Are aware of the AHA’s 2012 Consensus Statement for AHF.
Are interested in developing a collaborative relationship to develop protocols, patient information, and quality improvement activities for AHF patients.
Consider a data collection process to better understand the outcomes of AHF patients:
Hospice length of stay
Inpatient deaths: ward and ICU
Data on cardiac device use among dying patients
Investigate the variety of PC-AHF collaboration models.
ENABLE: a phone- and manual-based intervention conducted by advance practice PC nurse coaches with patients and their primary family caregivers.
Dedicated heart failure palliative care teams: various models exist including a dedicated palliative care heart failure inpatient service to a single physician dually trained in cardiology and palliative care.
Reflexive palliative care consults for advance care planning on all patients prior to ventricular assist device implantation.
Palliative Care specialist attendance at multi-disciplinary advanced heart failure meetings.
Develop an Action Plan for improving care that includes:
Early identification of patients at high-risk for unmet palliative care needs
Standardized assessment tool
Shared decision making documentation tools
Data collection and Quality improvement processes
Staff education (see appendix 2 for AHF patient care tips).
Allen LA, Sevenson LW, et al. Decision making in advanced heart failure: a scientific statement from the American Heart Association. Circulation 201;125:1928-1952
Cubbon RM, Gale CP, et al. Changing characteristics and mode of death associated with chronic heart failure caused by left ventricular systolic dysfunction: a study across therapeutic eras. Circ Health Fail 2011;4:396-403.
Sullivan et al. Diagnosing and discussing imminent death in the hospital: a secondary analysis of physician interviews. J of Pall Med 2007: 10(4) 882-893.
Dionne-Odom JN, Kono A, et al. Translating and testing the ENABLE: CHF-PC concurrent palliative care model for older adults with heart failure and their family caregivers. J of Pall Med. 2014 Sep 1;17(9):995-1004.
Bakitas M., Lyons KD, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA; 2009 302(7), 741-749.
Sagin A, Kirkpatrick JN, et al. Emerging collaboration between Palliative Care Specialists and Mechanical Circulatory Support Teams: a qualitative study. Journal of Pain and Symptom Management. 2016 Jul 9.
Appendix 1: Top 10 Things to Know in Shared Decision Making for AHF Patients
Shared decision making involves clinicians and patients sharing relevant medical information to work towards medically reasonable decisions that are aligned with the patient’s values.
Shared decision making has become more challenging and yet more crucial in AHF as duration of disease and treatment options have increased
Difficult discussions now simplify difficult discussions later.
Shared decision making is not a “one and done” discussion, but rather an iterative process that evolves with time.
A transparent acknowledgement of prognostic uncertainty should be included in AHF discussions with patients and caregivers.
An annual heart review should include discussion of current and potential therapies for anticipated and unanticipated events such as cardiac arrest, respiratory failure, or renal failure.
Discussions about potential therapies should include outcomes beyond just survival, including symptom burden, functional limitations, quality of life, and obligations on caregivers.
Clinicians need to take responsibility for initiating end of life discussions.
Assessing emotional readiness of the patient and family is vital to effective communication.
Changes in reimbursement and organizational structures are essential to improving medical decision making in AHF.
Appendix 2: Other AHF Patient Care Tips
Avoid waiting until you are certain death is imminent to begin advance care planning discussions. Clinicians often do not become certain death is approaching until patients have only hours to days left to live. This is often too late to begin a shared decision-making process.
Utilize illness trajectory curves as patient education tool on the anticipated projection of AHF.
Normalize hospice and palliative care by raising these terms earlier in the disease trajectory.
Discuss the option of deactivation of implanted defibrillators at each annual heart failure review, hospitalization, or whenever the device is near the end-of-battery life.
Collaborate with area hospice agencies to ensure appropriate AHF therapies can be offered by if needed to palliate specific AHF symptoms – e.g. intravenous or subcutaneous diuretic administration, beta blockers, or ace inhibitors.
Collaborate with hospice agencies with regards to the appropriate deactivation of implanted defibrillators and withdrawal of ventricular assist devices or other more complex AHF therapies at home or hospice facilities.