Your Care Instructions

If you have heart failure, taking care of yourself will help you feel better and live longer. But the disease often gets worse over time. So it may be a good idea to plan for the future now while you are active and able to communicate your wishes.

If you do this kind of planning, it does not mean that you are giving up. It's simply the best way to make sure that you get the care and treatment that you want. It can also make things much easier for your loved ones.

What can you do to plan for the end of life?

• Talk openly and honestly with your family and doctor. This is the best way to understand the decisions you will need to make as your health changes. Know that you can always change your mind.
• Ask your doctor about common life-support treatments. These include tube feedings, breathing machines, and fluids given through a vein (I.V.). It may be easier to decide if you want them after you are sure you understand what they are and how they may help you.
• Think about preparing written papers that state your wishes. These papers are called advance care plans. If you do this early and review them often, there will not be any confusion about your wishes. You can change your instructions at any time.
• If you are near the end of your life and you have a heart device such as an implantable cardioverter defibrillator (ICD) or pacemaker, talk to your doctor about turning it off. Include this in your advance care plan.
• Ask a friend or family member to make decisions for you when you no longer can. Choose someone who knows you well and understands what makes life meaningful for you. Talk to this person about the kinds of treatments you want or don't want. Make sure this person understands your values and wishes.
• You may decide to try life-supporting treatments for a limited time. This can help your doctor see if they will help. You may also decide that you want your doctor to do only certain things to keep you alive. It may help to think about the big picture, like what makes life worth living for you or what your values and goals are.
• Ask your doctor for an estimate of how long you may live. Your doctor may not always know. But your doctor can tell you what usually happens with heart failure.

Which papers should you prepare?

If you have heart failure, you may find it hard to think about a time when you might not be able to care for yourself. But since heart failure tends to get worse over time, it's important to make a plan for the care you want later. An advance care plan can help you do this.

Advance care plans are papers that tell doctors how to care for you at the end of your life. You don't need a lawyer to write these papers.

If you prepare these papers, be sure to give a copy to your doctor. It's also important to give a copy to a family member or close friend.

• Consider a do-not-resuscitate order (DNR). This order asks that no extra treatments be done if your heart stops or you stop breathing. Extra treatments may include cardiopulmonary resuscitation (CPR), electrical shock to restart your heart, or a machine to breathe for you. If you decide to have a DNR order, ask your doctor to explain and write it. Place the order in your home where everyone can easily see it.
• Think about naming a person to make decisions about your care if you aren't able to. This person is called a substitute decision-maker or health care agent. Most people ask a close friend or family member.
• Ask your doctor or your local public health unit about advance care plans. They may have forms for these types of papers.
• All of these papers are simple to change. Tell your doctor what you want to change. Ask him or her to make a note in your file. Then give your family updated copies.