Heart failure is a progressive illness which, despite the best drug, device and surgical treatments, symptoms can intensify. Many symptoms can be appropriately managed using supportive and palliative methods, which can be given at the same time as treatment. The progression of heart failure is unpredictable and varies from person to person, so you may feel uncertain about exactly what to expect in the future. Therefore, it’s important for you and your family to talk about how you want to be cared for in the future, should you become very ill and unable to make decisions about your medical care. You should also discuss this with the key healthcare professional involved in your care, be that a primary care physician, cardiologist, or heart failure nurse.
Planning or making plans for the final weeks of life should not be perceived as ‘giving up on life’, but rather as a positive step towards making those difficult choices to prevent practical or healthcare concerns in the future. It is best completed when you can make decisions, so don’t leave it too late. Getting answers to your questions and letting people know what you want during your final days or weeks, will help you feel more in control and give you peace of mind as you go about living your life.
This section looks at the various options that are available to you in planning your future care. You may want to think about these options and topics, discuss and agree them with your family. It’s important to remember that there is no right or wrong way to plan for your future care, just be open and honest about your feelings and try to make choices that are best for you.
- Advance care directive
- Do-not-resuscitate order
- Device deactivation: this will include turning off the “shock” function of your implantable cardioverter defibrillator (ICD)
- Living will
- Sensitive but important questions for your doctor or nurse
Starting these types of conversations can be difficult, therefore “prompt or question lists” have been developed to enable you to ask your professional specific questions which are currently concerning you.
Many family and friends may also be afraid to talk about this subject, so you may need to bring up the topic. Below are a few suggestions on how to start a conversation about this often-sensitive subject:
- I would like to talk about the help we will need if my heart failure gets worse.
- Let us talk about what we should do to make life easier should my heart failure symptoms get worse.
- Can we check out what practical support is available when I can no longer take care of myself?
- I would like to talk about what you should do in the event of an emergency.
Useful link: Facing the end of life