Executive Summary

Advance care planning for heart failure patients can be improved by basing discussions on four transitions commonly experienced by patients and caregivers, a recent study suggests. According to experts, providers can do the following:

• Readdress patient preferences frequently.

• Use transition points to trigger discussions.

• Elicit specific instructions from patients on when to start and stop life-sustaining care.


Heart failure patients and their caregivers experience four transitions, according to a recent study of 33 patients and 20 of their informal caregivers.1 These are when patients are first diagnosed, learning to adjust to life with heart failure, taking back control of their life, and understanding that death is inevitable.

“The study findings shed light on an alternate way to look at the future, beyond the way doctors and other professionals have talked about it,” says Jacqueline Jones, PhD, BN, RN, FRCNA, FAAN, the study’s lead author. Jones is an associate professor in the College of Nursing at the University of Colorado Denver.

Support at different transitions can be tailored to an individual’s strengths and understandings of their illness at that time, says Jones.

“One of the major impediments to advance care planning for congestive heart failure [CHF] is the lack of clear triggers for providers to know it’s time to have an advance care planning talk,” says Maria Silveira, MD, MPH, a clinician scientist at the Ann Arbor Health Services Research and Development Center of Excellence and assistant professor in University of Michigan’s Bioethics Program.

“Hopefully, this research will improve the frequency with which providers have these discussions, and importantly, readdress patient preferences,” she says.

The four transition points identified by the researchers provide “a perfect framework” for introducing and discussing advance care planning, says M. Jane Markley, RN, MEd, FACHE, a Derwood, MD-based consultant who provides training on advance care planning. “Finding out where the patient is in their understanding of the disease is critical to beginning the conversation so that you can speak at their level of understanding,” she explains.

Providers can use the following four transition points to inform advance care planning discussions with heart failure patients:

When a patient is first diagnosed. At this stage, providers should encourage a patient to appoint a surrogate, educate the patient about forms of life support, and begin an ongoing discussion about the patient’s general goals of care and life plan, Silveira says.

Learning to adjust to life with heart failure. As the illness advances, advance care planning conversations should elicit specific instructions from patients about when to start and stop life-sustaining care and cardiopulmonary resuscitation, says Silveira.

“The biggest issue is the defibrillator,” she says. “Patients should be told upfront that defibrillators are only temporary fixes for one aspect of CHF, and that eventually all patients have to pick the right time to turn them off.”

Reframing and taking back control of one’s life. “This is a perfect opportunity to discuss the ways that an advance directive will allow patients to take control of their future, and how they wish to live well for the rest of their life,” says Markley. Providers can also talk about the benefit of advance care planning for their loved ones who will be left behind. “This will allow them to see the gift that they are giving to others by completing their advance directives,” says Markley.

Understanding and accepting that death is inevitable. “Toward the end, conversations begin to directly address how and where a patient wants to die,” Silveira says.

Bioethicists can help physicians build skills in having end-of-life discussions with heart failure patients, families, and caregivers in the following ways, says Markley:

• Assisting in development of policies and protocols for eliciting and documenting patients’ preferences.

• Helping hospitals prepare for what should happen when patients or families request therapies that are not recommended.

• Educating providers in developing and interpreting advance directives.

Many physicians have little or no training in end-of-life conversations. “Through no fault of their own, they have either learned on the fly or not learned at all how to deal with these issues,” says Markley.

• Instructing providers at their institutions about the ethics of withholding and withdrawing life-sustaining therapies.

“It’s amazing how many providers don’t fully understand that it is morally and legally okay to turn off a defibrillator,” says Silveira.


  1. Jones J, Nowels CT, Sudore R, et al. The future as a series of transitions: qualitative study of heart failure patients and their informal caregivers. J Gen Intern Med 2015; 30(2):176-182.


  • Jacqueline Jones, PhD, BN, RN, FRCNA, FAAN, Associate Professor, College of Nursing, University of Colorado Denver. Email: Jacqueline.Jones@ucdenver.edu.
  • M. Jane Markley, RN, MEd, FACHE, President, M. Jane Markley Consulting, Derwood, MD. Phone: (301) 744-7656. Email: jane@mjmarkley.com. Web: www.mjmarkley.com.
  • Maria Silveira, MD, MPH, Assistant Professor, Bioethics Program, University of Michigan, Ann Arbor. Email: mariajs@med.umich.edu.