Planning for Advanced Heart Failure

Plan for peace of mind 

An important part of shared decision-making is clarifying what you want done in the future. Sharing your preferences for future care is advance care planning. It allows you to speak for yourself, even when you can’t. It also helps your family make decisions based on your priorities.

Advance care planning involves: 

• Learning which health decisions you might have to make in the future
• Thinking about your goals and care preferences
• Talking to your family and health care team about what’s important to you
• Writing your wishes in an advance directive, which you can update if your wishes change

Some questions to consider:

• Would you want CPR?
• Would you want a feeding or breathing tube?

Palliative care

Palliative care can be provided at any stage of your illness. The goal is to improve quality of life by relieving stress and symptoms. 

Palliative care can provide: 

• Relief of pain and symptoms of heart failure
• Emotional and spiritual support for you and your family
• Help with making complex treatment decisions
• Help with practical issues, such as advance directives or insurance
• Support services for caregivers, such as respite care and grief counseling

Palliative care team members will likely include a: 

• Doctor
• Nurse
• Social worker
• Chaplain
• Physical therapist
• Occupational therapist
• Dietitian 
• Psychologist 

These professionals can become a part of your health care team, just like your cardiologist and other health care professionals.

End-of-life care options

Talking about and preparing for the end of life can be hard. Even though you can’t control when you die, planning ahead gives you more control over aspects of the process.

End-of-life care options include:

• Turning off an implantable cardioverter defibrillator (PDF). Electrical shocks from an ICD can cause pain and discomfort for patients and families near the end of life. You can turn off the ICD shock function, or you might choose not to get a new battery when the current one expires. Watch an animation of an ICD.
  
  
• Turning off a mechanical heart pump. You need to decide when to turn off a left ventricular assist device (LVAD). This discussion and plan should happen before the device is implanted.
  
  
• Choosing hospice care when treatment is no longer working or your condition is getting worse. It provides comfort and support to advanced heart failure patients and their families. Hospice helps people live comfortably at the end of life.

Hospice care is usually provided at home by a team that includes:

• Doctor and nurse
• Therapist
• Social worker
• Spiritual adviser
• Trained volunteers
• Other professionals

They work with you and your family to create a personalized care plan that supports your physical, emotional and spiritual well-being.

Hospice care often includes: 

• 24/7 medical support for symptom relief
• Emotional and spiritual counseling
• Physical and occupational therapy to help with daily tasks, such as getting dressed, showering and moving around safely
• Complementary therapies such as art and music
• Respite care to give caregivers and families a break
• Home health aides to help with personal care such as bathing, grooming and eating
• Help with insurance, legal matters and other practical issues
• Trained volunteers to help with meals, errands and babysitting
• Bereavement support and counseling for caregivers and families 

Making plans for how you want to spend your remaining life can be tough. But discussions now can simplify decisions later.