Nearly 6 million Americans are currently suffering from Heart Failure (HF). This all too common ailment occurs when the heart is unable to pump blood fast enough, resulting in swelling, shortness of breath, and other issues. In the past, heart disease killed ruthlessly and quickly; patients were more likely to die from heart attacks and cardiac arrest than they are today. But with improved medical care and implanted devices including automated defibrillators, a growing number of heart patients survive for years, even decades, coping with a chronic, progressive condition. The progress is remarkable, but it is important to understand that the disease does continue to progress.
Heart failure affects approximately two to five percent of adults aged 65–75 and greater than ten percent of adults aged 80 and older. Patients with advanced cardiac failure often suffer from severe physical symptoms listed previously, but they also suffer from psychological symptoms like fear, social isolation and restrictions regarding activities associated with a positive quality of life. Today’s treatments mitigate much of that loss in quality of life – and that is a good thing.
The bad news is that half of all heart failure patients die within four years of diagnosis, and more than 50 % of those with severe heart failure die within one year. In early stages, medication and a healthy lifestyle can help manage it, but as the disease progresses and the heart becomes weaker, treatment gets more complex. That’s the time to have difficult, yet important, conversations with family and doctors about the care you want to receive. When heart failure progresses to an advanced stage, there are still many treatment options but the decisions – ranging from “do everything possible” to “strive for comfort” – aren’t easy.
There are no widely accepted guidelines for caring for these patients as they near the end of life. For people with other issues, like cancer, medical specialists regularly recommend hospice at an appropriate time. That is less common with cardiologists. Heart patients account for just 15 percent of hospice deaths, while cancer patients make up half, according to a recent study.
That paper, published in the Journal of the American College of Cardiology, reviewed a number of ways in which heart patients are sometimes let down at the end of life. Most notably, implanted defibrillators often remain activated until the patient has lost their battle, even for those in hospice. One-fifth of heart patients with implanted defibrillators are subjected to painful shocks in the last few weeks of life. Eight percent are actually shocked by painful implants designed to save their lives, in the final minutes before death. Sadly, most patients are never told that they can ask to have the defibrillator be turned off.
To be fair, end-of-life care is not typically a focus for heart doctors; “Cardiologists thrive on the dramatic saving of lives”, said Dr. Michael Bristow, a cardiologist at the University of Colorado Denver. “They devote their professional lives to rescuing patients having heart attacks and bringing them back from the brink”. End-of-life care is not typically their focus; neither do they spend much time pondering what some of their patients may experience in the future. “Those who go into cardiology are not necessarily ones who want to deal with death and dying,” Dr. Bristow said.
The very nature of end-stage heart failure makes it all the more difficult to prepare.
The American Heart Association recommends that shared decision-making between the providers and the patients is key to a good care plan. Doctors provide the medical facts and figures, while the patient (and often with input from family and friends) provide their personal goals and preferences.
To guide shared decision-making, the American Heart Association recommends:
- An annual heart failure review to discuss how well you are functioning, current treatment goals and your preferences for treating possible emergencies, such as kidney failure or sudden cardiac arrest.
- “Milestone” discussions to reassess treatment goals following a major event, such as a defibrillator shock, hospitalization or significant loss of function.
- Honest and thorough conversations about major side effects of treatment, quality of life, loss of independence, impact of worsening symptoms and increased commitment by caregivers and families.
- Considering palliative care, offered alongside medical treatment, to help manage symptoms and assist you and your family with tough decisions. Developing a care plan for the end of life that ensures your needs and wishes are met.
Living with advanced heart failure is difficult, and the medical decisions can be complicated. With shared decision-making, you can avoid heat-of-the-moment decisions and instead take time to figure out what’s best for your personal situation.