• Preparing for End-of-Life Issues for Patients with Congenital Heart Disease


    Preparing for end-of-life care is important for everyone. If you or someone you love has congenital heart disease—whether the heart disease is mild or severe—making decisions now can help direct care across your life span (or that of a loved one) to ensure that treatment decisions meet you and your family’s expectations. Making these important decisions ahead of time enables everyone to be together and optimizes time spent with loved ones. While many hard questions may come up and difficult decisions may have to be made, patients and families are helped by having a clearer idea of what to do during difficult times.

    Preparing in advance can also help ensure that your wishes are carried out if you are not able to communicate with doctors and family members. These decisions do not necessarily only need to be made once. In fact, having continuing communication with your loved ones about end-of-life issues is important in making the right decisions that affect your medical care and protect your personal dignity.

    Understanding Common End-of-Life Terminology

    As you begin the process of documenting your wishes for end-of-life care, you will encounter a number of different terms and related paperwork. Some of the most common terms related to end-of-life care are explained below.

    • Advance directive. An advance directive outlines the types and extent of care you would like to receive if you become unable to make medical decisions or communicate with your physician or family. It also allows you to designate someone to make healthcare decisions for you if you are unable to do so. Laws and paperwork related to an advance directive vary by state. You can often find these forms for your location by conducting an Internet search for “advance directive” and the name of your state. The search results will typically take you to your state’s Attorney General’s office or Department of Health website. See the list of Resources below for additional options.
    • Living will. This document is the part of an advance directive that indicates which forms of medical treatment you would or would not like to have under certain circumstances, if you are unable to communicate your wishes at the time. For example, you can state preferences about whether life-sustaining measures such as artificial ventilation (a "breathing machine") or a feeding tube should be used if recovery is deemed very unlikely. Some patients will opt to allow natural death to occur; others will want to allow treatments for a designated trial period; and still others will feel that their lives should be sustained by any means possible, for as long as possible. A living will enables you to outline these wishes for health care providers and loved ones.
    • Durable power of attorney (DPA). A healthcare power of attorney is when you legally designate a proxy to make decisions for you if you are unable to do so. The person whom you designate will typically be a family member or close friend (and not a healthcare provider). You will want to choose someone whom you trust and understands your wishes for end-of-life care and feels comfortable implementing them.
    • Do not resuscitate (DNR) order. This document tells your care team that if your heart stops beating or you stop breathing while in the hospital, you do not wish to have medical professionals attempt to restore these functions through cardiopulmonary resuscitation (CPR). The DNR order will be created by your physician, with your approval, or you can state in your advance directive that you would like a DNR order to be issued in appropriate circumstances. Some people also have out-of-hospital DNRs that express their wish not to receive CPR if they are not in a hospital, but this may be harder to enforce in practice, as someone may not be aware of the order and may act in an emergency to try to save the affected person’s life.

    Getting Help with Making End-of-Life Decisions

    End-of-life care can be emotionally draining to think about and make decisions around. It should not also be difficult from a paperwork/legal jargon standpoint. If you need help in understanding the laws in your state and which documents you may need to complete, assistance is always available. You can receive help from a hospital social worker, a lawyer who practices family law, or through organizations that specialize in end-of-life issues (see below for Resources). Please do not be reluctant to ask for help. You do not have to navigate this process on your own. The primary goal is to make sure that end-of-life care proceeds according to your values.

    Resources and Support When You Are Facing End-of-Life Decisions

    • www.caringinfo.org: This website for the National Hospice and Palliative Care Organization contains links to download an advance directive form specific to your state, as well as other helpful information about end-of-life care.
    • http://www.hospicefoundation.org/: The website for the Hospice Foundation of America offers detailed information about creating an advance directive and other issues related to end-of-life care.
    • http://www.achaheart.org/: The Adult Congenital Heart Association offers support covering many aspects of congenital heart disease.

    Questions to Ask Your Doctor About End-of-Life Issues


    The following questions can help you talk to your physician. Print out or write down these questions and take them with you to your appointment. Taking notes can help you remember your physician’s response when you get home.

    • Who should make medical decisions for me if I am unable to do so?
    • What paperwork do I need to fill out to legally express my wishes about end-of-life care?
    • Are the wishes expressed in my living will clear, and do you feel comfortable implementing them?
    • What is the process for having you create a do not resuscitate (DNR) order?
    • What other professionals may be of benefit to me (health insurance/financial counselors, social workers, mental health counselors)?
    • Who can I turn to for support (hospital staff, support groups, etc.)?