An important part of shared decision making in advanced heart failure is to clarify what you would want done when future events occur, including unexpected ones. Would you want a feeding tube or CPR? What if you’re unable to breathe on your own? Would you want a tube placed down your throat to help you breathe?The process of anticipating future scenarios and making your preferences known is called advance care planning. It allows you to speak for yourself, even when you can’t.
Advance care planning involves:
- Learning what health decisions you may have to make in the future
- Thinking about your goals and preferences
- Discussing what is important to you with your family and doctor
- Documenting your plan in an advance directive, which can be updated if your wishes change
The goal of palliative care is to help patients live better by relieving symptoms and improving quality of life. Receiving palliative care, which should not be confused with hospice, does not mean you have to stop heart failure treatment. Palliative care can be provided at whatever point you need it, no matter the stage of illness.
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
- Assistance with practical issues, such as advance directives or insurance
- Support services for caregivers, such as respite care and grief counseling
“Heart failure care requires a palliative care team addressing symptoms and quality of life just as much as it requires a cardiologist addressing medical treatment,” said Paul J. Hauptman, M.D., a cardiologist and professor of internal medicine at St. Louis University School of Medicine in Missouri.
Care at the End of Life
Talking about and actively preparing for end of life can be upsetting. Even though you may not be able to control when you die, you can make plans that allow to you control many aspects of the dying process.
In advanced heart failure, care options at the end of life include:
- Turning off an implantable cardioverter defibrillator: Electrical shocks from an ICD can cause unnecessary suffering for patients and families near the end of life. The shock function of an ICD can be deactivated, or you may choose not to receive a new battery when the device nears the end of its battery life. Watch an animation of an ICD.
- Turning off a mechanical heart pump: A decision must be made about when to turn off a left ventricular assist device (LVAD) at the end of life. A conversation about when you would want to discontinue LVAD support should be part of the decision-making process before the device is implanted. A thoughtful discussion and careful plan should be in place well before turning off the device.
- Hospice care: When the transition is made from quantity of life to quality of life, hospice care provides comfort and support to advanced heart failure patients and their families. Hospice care services are often provided in the home by a team that includes a doctor, nurse, therapist, social worker and other professionals. They work with you and your family to develop a personalized care plan based on your goals and needs.
Hospice care services may include:
- Medical care to manage symptoms (the hospice nurse and doctor are on call 24 hours a day to provide care)
- Emotional and spiritual counseling
- Physical and occupational therapy to help a person develop new ways to perform daily tasks, such as getting dressed, taking a shower and moving safely around the house
- Art therapy, music therapy and other complementary therapies
- Respite care to provide a break for caregivers and families
- Home health aides to help with bathing, grooming, eating and other personal health needs
- Help with insurance, legal documents and other practical issues
- Assistance from trained volunteers who provide a variety of support services, such as babysitting, running errands and preparing meals
- Bereavement support and counseling for caregivers and families