Plan for peace of mind
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 or breathing tube? CPR? The process of anticipating future scenarios and communicating your preferences is called advance care planning. It allows you to speak for yourself, even when you can't. It also helps your family make decisions according to your priorities.
Advance care planning involves:
- Learning what health decisions you might have to make in the future.
- Thinking about your goals and preferences.
- Discussing what is important to you with your family and health care professional.
- 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 stress and symptoms to improve quality of life. Receiving palliative care, which isn't the same as hospice, doesn't mean you have to stop heart failure treatment. Palliative care can be provided when you need it, no matter the stage of your 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.
Members of the palliative care team will likely include a doctor, nurse, social worker, chaplain, physical therapist, occupational therapist, dietitian and psychologist. These professionals can become a part of your health care team, just like your cardiologist and other health care professionals.
Care at the end of life
Talking about and actively preparing for the end of life can be upsetting. Even though you can't control when you die, you can make plans to 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 (PDF): Electrical shocks from an ICD can cause unnecessary pain and discomfort for patients and families near the end of life. The shock function of an ICD can be deactivated, or you might choose not to receive a new battery when the current one expires.
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 thoughtful discussion and careful plan about when you would want to discontinue LVAD support should be part of the decision-making process before the device is implanted.
- Hospice care: At some point, it may be time to make a decision to stop treatment if you’re not responding to treatment or your condition is worsening. Hospice care provides comfort and support to advanced heart failure patients who are no longer receiving treatment and to their families. Hospice helps people with heart failure nearing the end of their life live comfortably.
Hospice care services are often provided in the home by a team that includes a doctor, nurse, therapist, social worker, spiritual adviser, trained volunteers and other professionals. They work with you and your family to develop a personalized care plan that supports your physical, emotional and spiritual well-being based on your individual goals and needs.
Hospice care services often 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.
- 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.
Making plans for how you want to spend your remaining life can be tough. But difficult discussions now can simplify difficult decisions later.