Heart failure: Preparing for end-of-life issues

It is important to determine your preferences for end-of-life care before the need arises.

Thousands of people in this country will die from heart failure each year despite the best efforts of doctors and modern medicine. Since the disease can quickly progress to a more severe form, many people (and their families) are unprepared for decisions that they must make regarding the type of care they wish to receive at the end of their lives.

You will need to decide whether life-support measures should be used if your condition becomes more severe. Some people feel very strongly that every possible medical treatment should be used to prolong their lives. Others feel that if there is no reasonable chance of their health improving, then the only measures that should be taken are those that make them as comfortable as possible. This is a very personal, and can be a very difficult, decision.

In general, it is much easier to make this decision when you feel relatively healthy and are able to openly express your wishes to a family member or friend.

What do I do?

In 1990, Congress passed the Patient Self-Determination Act (PSDA). The PSDA was the first federal law addressing advance directives. Advance directives are legal documents that instruct doctors on how to care for you at the end of your life. The bill mandates that almost all U.S. hospitals inform people of their right to create an advance directive.

Advance directives can include the ability to refuse treatment in specific situations. There are three main types of advance directives that have evolved since approval of the PSDA:

  • Do not resuscitate orders (DNRs)
  • Living wills
  • Durable power of attorney documents (DPAs)

Do not resuscitate orders (DNRs). DNRs typically request that no extraordinary measures be used to save your life. Extraordinary measures typically include measures such as cardiopulmonary resuscitation (CPR), the use of an electrical shock to stop a fatal abnormal heart rhythm (defibrillation), intubation (placement of a breathing tube down your throat), or the use of lifesaving medicines. People with DNR orders can be given drugs that make them more comfortable. You may request that you be identified as a DNR if you wish to avoid expensive medical care that probably will not improve your long-term prognosis.

Living wills. Living wills are written documents that contain specific instructions about the type of treatment you wish to receive at the end of your life. Unlike a DNR order, which applies to a specific moment when you require resuscitation, living wills apply to more general situations.

You must meet one of two broad conditions for your living will to be triggered:

  • You have slipped into a permanent coma.
  • You are not able to make decisions on the type of care you wish to receive.

Once two doctors agree that the condition has been met, your doctor will deliver care based on the directions in your living will. Usually, living wills instruct doctors not to prescribe any treatment that would unnecessarily lengthen the process of dying.

As your heart fails, you may gradually begin to lose consciousness. You may slip into a coma. At this point, it is usually only a life-support system, such as a respirator, that is keeping you alive. If your living will instructs your doctor not to prescribe any treatment that would lengthen your dying process, your doctor would remove you from the life-support system.

Living wills can be very specific. For example, you can request that you receive treatment for a specific number of days or that only certain measures be taken to keep you alive.

Durable power of attorney (DPA). A durable power of attorney for health care document appoints a specific person (surrogate) to make decisions about your care if you are not able to make those decisions. (A DPA can also be called the appointment of a health care agent or health care surrogate.) Unlike DNRs or living wills, DPAs allow an independent observer of your choice to assess your current health condition and to speak to your doctor before any decision about your care is made. DNRs and living wills do not allow for this type of dialogue, because your treatment is based on choices you made without knowing the exact nature of your condition.

Although most people do not sign over this authority until they receive a diagnosis of end-stage heart failure, you may designate a surrogate at any time in your life. When you are no longer able to make decisions about your care, this person maintains broad authority over the type of care you receive, as well as when treatment should be stopped.

Your DPA tells your doctor who to contact in the event that you are not able to make a decision about your care. This person is then informed of your condition and can meet with several doctors to discuss the range of treatments that can be provided (usually simply keeping you alive).

Given the importance of these decisions, it is necessary that you select a person who can assess the advantages and disadvantages of continuing treatment. A surrogate is usually a family member or friend. Although family members may make good surrogates because they are most familiar with your wishes, they also may be under a lot of emotional strain. It is always best to inform the person you designate as surrogate in your DPA and make sure that he or she is comfortable with this role.

Serving as a surrogate

Being chosen to make decisions about the type and amount of treatment delivered to another person is an enormous responsibility. If you feel that you do not have the strength to undertake this task, you should tell the person who selected you to select another person. Before agreeing to serve as a surrogate, you should also know that you will not be held financially responsible for any of the decisions you make. Your authority over care will not be reduced unless the patient specifically requests it to be. Since people can only choose one surrogate at a time in a DPA, you alone will have authority over care.

How do I do it?

Despite the legal nature of these documents, you do not need an attorney or other legal counsel to develop a do not resuscitate (DNR) order, living will, or DPA document. The only requirement for each of these advance directives is that you are at least 18 years old.

A DNR order is perhaps the simplest form of advance directive because you don't need to formally write it, have witnesses for it, or get it notarized. However, your doctor must write the DNR order. You need to have a DNR at the hospital where you receive care and at home. Display the DNR order prominently at home—for example, on the refrigerator—where emergency personnel can see it. For a DPA or a living will, you must also have one or two witnesses or a notary present when you sign the form. Your advance directive will be placed in your medical file.

Since different states have enacted specific regulations on advance directives, you should consult the regulations of the state where you live. The Internet sites of many state health departments contain downloadable forms for each type of advance directive.

How do I change my mind?

DNR orders, living wills, and DPA documents all are rather simple to change. You only need to verbally tell your wishes to a witness, your doctor, or any other health professional. To make sure that your wishes will be followed, make sure that a note is made in your medical file that you have changed your end-of-life care instructions.

Last Updated: August 25, 2008

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